Assisted Living for Individuals with Alzheimers. Do Your Homework. Manage Expectations.

My mom has advanced Alzheimer's disease (AD). In the early stages of her dementia we kept her in her home. Something I highly recommend for any senior who wants to remain at home, be safe and can still communicate this preference. Eventually, as my mom's needs increased, we hired a 'companion' from a local home care company. The one I used was Comforcare - excellent agency but it's a franchise business model so quality may vary by location.

Initially the companion visited my mom for a few hours each day (about $20 per hour and covered by most Long Term Care insurance policies) but as my mom's needs increased we increased the hours. Eventually, we hired a full-time live in from the agency for about $200 per day. Sounds like a lot and it is but quality residential care (e.g., assisted living) can be more than this in some locations.

Eventually, my mother's needs became more than what a single caregiver in the home could effectively manage. At this point we moved her to an assisted living facility. But wait, how can you place someone with AD into "assisted living" if they can't care for themselves?

As it turns out, most assisted living facilities have a dedicated floor for residents with AD. If a family can afford it, it's a better option than a nursing home (way better). If you do choose this option, in addition to the obvious questions to ask a facility , make sure the AD section is on a ground floor, residents can walk outside on their own (fenced in area of course), the staff is trained in AD, rooms have sensors to detect at-night wandering, there is plenty of stimulation, residents can get out once in a while (via a bus with a lift) and daily schedules are flexible.  One such facility that I am familiar with that meets all of these requirements is Aegis Senior Living - in particular, the Aptos, CA location. This is a very impressive facility. They "get it" when it comes to assisted living for AD.     

Now, here is where it gets interesting and why you need to do your homework when considering assisted living for people with AD.

Assisted living facilities do not typically provide one-on-one care. So if you need assistance getting dressed, going to the bathroom, getting to-and-from meals, etc. your going to have to pay extra for these services or hire an outside agency (like Comforcare) to provide "supplemental" care. And as your needs increase an assisted living facility may ask you to provide 24/7 supplemental care. So it is not uncommon to be paying close to or in excess of $100,000 a year for care in some areas.  In my experience the good assisted living facilities will be very clear about this but the not-so-good ones will be vague about it. Remember, when you take a tour of an assisted living facility the tour guide is a sales person. They get paid to place residents.

So what can a family do that can't afford this option? They typically end up spending all of the elder's money on care and then qualify for Medicaid. True, you can "spend down" or "gift" assets to other family members to qualify for medicaid faster but the laws make it very difficult to do this - and part of me understands and accepts the reasons why. 

Crazy isnt it? Yes it is. The sad truth is that families of AD patients get a double whammy because they need to spend so much more on supplemental care. And to make matters worse, the tax code and LTC insurance companies do not distinguish between elders with AD and those without so you are subject to the same daily maximums and restrictions.

I don't blame anyone for our imperfect system but as one Geriatric Care Manager recently told me "when congressional leaders have to begin caring for loved ones with AD I think the rules will be changed".

I hope you are right Nancy and I have a feeling changing this imperfect system is the final legacy the Baby Boomers will leave us with. They have the numbers and the influence to do so.

At least I hope so.

Comments

[Reg Fife]

Pretty good post. I just wanted to point out that assisted living facilities can vary widely depending on what kind of care they give, so a person should be careful about making assumptions on what a "typical" assisted living place is.

[John]

thanks for the post.....the information was very helpful!

I just came across this senior care placement agency called Your Senior Care. (http://www.yourseniorcare.com) I know that there are a lot out there but they were super knowledgeable and helped me through the whole process.

Cheers,

J

[Long Term Care Insurance Alabama]

Your blog post is impressive and inspirational. Long Term Care Insurance is extremely important to people with chronic disease like Alzheimer's disease.