We work with so many families who are struggling with dementia. Understanding how to deal with dementia is a growing problem in our society as the average age of our population continues to increase. We have all heard the statistic that 10,000 people become eligible for Medicare every day by turning 65. Every day. And caring for a family member with dementia can be rough. Sure, memory loss can make it hard for someone to take care of certain daily activities alone. But, it can also lead to dangerous situations such as pans left cooking away on the stove, unattended until the fire department shows up, or drives to the grocery store that end two counties over.
Dementia can also lead to “dementia-related behaviors,” such as sleep disturbances, agitation, physical or verbal aggression, general emotional distress, restlessness, pacing, yelling, delusions (firmly held belief in things that are not real), and hallucinations. Dealing with all this is very emotionally draining for the family, and it is relentless. Unfortunately, it never gets better; it only gets worse.
In-home caregivers are a godsend for everyone and worth every penny. They are trained to work with dementia patients and give the family much-needed respite. But many of our clients cannot afford in-home care, at $30 to $35 per hour, with any meaningful consistency. With a lack of affordable in-home care, family members must often step in and provide unpaid care at the expense of their jobs, obligations to their friends and other families, and, often, their own health.
So they come to us looking for a solution, looking for a safe place in a facility where their family member can seek care. We talk to them about memory care, which is specialized care for people living with dementia. Memory care communities typically feature secure environments with exterior doors locked 24 hours a day with keypad entries, staff members who closely monitor the residents, and activities designed to help residents retain and enhance their cognitive abilities.
“Yes, that’s exactly what our mom needs!” they tell us.
And then we have to tell them the bad news. According to Genworth’s most recent survey of long-term care costs, memory care costs on average in the State of California are $6,000 to $7,000 per month. And we all know that in the Bay area, everything is much more expensive.
And the awful news: Medi-Cal does not pay for memory care.
I have to say that sentence to families many times a month, and it is heart-breaking for them and me.
Medi-Cal pays for care at the skilled-nursing level: this means medically necessary care, care that is “reasonable and necessary to protect life, to prevent significant illness or significant disability, or to alleviate severe pain.” Medi-Cal requires a treating physician to determine the level of care needed and, essentially, write a prescription for this level of care.
We are lawyers, not doctors, so we have a hard time explaining what skilled nursing level care means to clients. That is something for a doctor to explain. What I do say to clients is to remember what the nursing homes they have been to are like and, if they have never been inside one, to think about what a hospital is like. Nursing homes are like small hospitals. The patients typically share a room with one or two other patients. They have a bed, they may have a chair for visitors, a dresser for belongings, a retractable table to use from their bed, and that’s about it. There is no dining room, no movie theater, no bingo night, no organized shopping trips. Skilled nursing is for people who need to live that kind of life. Many people with dementia are physically very healthy and can live for a long time with dementia before their physical health needs rise to the skilled-nursing level.
California recently passed Medi-Cal legislation that will eventually make it easier for some residents to qualify for Medi-Cal to help with long-term care. I am all in favor of expanding Medi-Cal to make care available to those who need it, and I applaud this new legislation.
What I would dearly love to see, though, is an expansion of Medi-Cal to help the many families struggling to care for a family member with dementia.
Best wishes,
Kirsten Howe
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