Early stage Dementia - Advocating for PT and OT at home

mblake27

My mom was diagnosed with early stage dementia (March), neurology scan, neuropsych testing done. Balance and coordination are changing quickly. Despite outpatient Physical therapy (19 sessions btw January to July), she continues to have wobbly balance issues, particular when stepping onto gravel surfaces or going down stairs. She uses a case mostly and periodically a walker. Trying to advocate for home PT, neurologist believes insurance won't approve and prefers she have a "Functional Gate Assessment" at a rehab to assess walking (this will assessment take place next week). In the meantime, trying to advocate for her home PT, and even home OT to help with memory/cognition exercises.

She's 83, vascular dementia (diabetic for 30+ years), lives in a private house, my sister is in the same home, works full time outside. I am trying to find a companion/aide to spend time with my mother during day time hours for med reminders, walks, conversation, and light help laundry/cooking. Seems like insurance is unrealistic is what they will cover for early Stage Dementia (she has medicare, does not qualify for medicaid) . Thoughts and advice? all welcomed.

M1

welcome to the forum. Unfortunately you're probably spitting into the wind here, Medicare is very limited in what they will cover. She's probably used up her PT benefit on the previous therapy and there will be a period of time before they'll cover any more—any unfortunately, it's unlikely to help because there's nothing reversible in the brain dysfunction. I have had similar experiences—my partner has suffered multiple falls including two bad head injuries and facial fractures, but cannot remember to use a walker and it is probably just a matter of time until she suffers another injury. She is on hospice now in a memory care facility and spends most of her time in bed and sleeping. She is 83, like your mom.

Similarly, Medicare will not cover home health aides except for limited situations after hospitalization. You're likely looking at private pay which can run $30+ an hour ($37 where I am). But you are entirely right to be looking—she should not be home alone, in all likelihood, or your sister will come home to find her on the floor.

Have you consulted an elder law attorney about qualifying her for Medicaid? The need would arise if she cannot afford to private pay for memory care in the future. There are ways of protecting assets and spending down what she has—but the rules vary by state, professional assistance is not absolutely necessary but can be a big help in getting right the first time.

I wish you well. The needs are well known but the public will to fund additional coverage is not there.

H1235

This situation sounds much like mine. Mom is probably a bit further along. She also has vascular dementia and a long history of diabetes. We tried pt for a while, and she was cooperative, but would not do much on her own. I’m not sure how much it helped. My mom lived with my brother who worked outside the home for about one and a half years. She was alone so much. Many days she didn’t even get dressed and was on her own for most meal(didn’t eat well). She also became angry and defiant about not using the stove or going outside when no one was home. It just wasn’t safe for her to be alone in the house anymore. At AL she has others to talk with, good meals and a reason to get dressed in the morning. She is angry about the move, but we are trying to figure out medicine to help with that. I hope you can figure out something that works. It’s so hard to know.

psg712

Agree with all of the above. Your statement that despite PT she continues to have balance issues demonstrates the frustration of therapy in dementia. It can have benefits but they are often short-lived as the PWD cannot remember what she has learned.

Your goal at this point is her safety at home. Yes, she could fall anywhere, even when she has supervision, but home alone has other dangers too. Might she try to leave and get lost? Can she use the stove or the shower safely? Would she open the door to a stranger or give financial information to someone over the phone? Lots to consider beyond her gait and balance issues. It's hard and lots of us have been there. I wish you the best.