My dad has dementia, I'm the POA, his assisted living refuses to follow the doctor's low carb diet. Is that legal for them to decline?

honestly who cares at this point let that person live their life to the end how they want. a POA can not insert themself to make decisions on sexual behavior, diet, can’t change a will, they can drink alcohol and do as they wish still have own dignity and dressing those decisions. a POA can only do financials and bills. Health care proxy makes health decisions and even though a doctor suggests it like you or me we have the freedom of choice to comply or not. who cares let them enjoy what ever food or happiness they get fro it cause their life is short. if it’s shortened so be it. less burden on you. i say don’t stress about it bigger things to worry about. prolonging life isn’t always quality for that individual.

I do find this negligent on the part of the AL kitchen and staff to so openly disregard a doctor's orders. Is this a staff doctor for the AL? Is there a nutritionist on staff?

I would speak to a director or the head of nursing. It is very wrong that they provide him with additional sugar packets. Those could be substituted with Splenda. Yes he will eventually die but the road there could be made worse with constant menu choices that are clearly in violation of doctors orders. I would emphasize that point to those bringing him his meals.

I would take this up with the AL Manager directly. Ask to see their charter or similar on standards.

In Aus where I am all Aged Care Residences must abide by The Aged Care Act & Quality Standards. Diet & Nutrician is one of the standards. Every resident has rights, having their meals meet their Care Plan would be part of that. Changes to diet by a Doctor need to be adjusted to the Care Plan & the kitchen notified.

Diet type by choice eg vegetarian.
By medical need eg diabetic, celiac, low salt. By texture eg softened, puree etc. Religious/cultural needs may be noted too eg no pork.

At an AL place I volunteered they had various dining areas. Some for people able to manage their meal independantly, other tables that included staff to sit & supervise. Others for those that needed hands-on assistance.

Placing the sugar bowl (+ anything else, pepper, butter, spare cutlery etc) away from residents that require a little supervision is just common sense to me.

Your father has dementia and there is no happy ending with it, so I say just let him eat what he wants and when he wants.
Why wouldn't you want your fathers final months/years to be happy and stress free, enjoying what he likes, instead of imposing on him strict dietary rules?
Often time folks with dementia do crave sugary items. It goes with the disease.
I always say that one has to pick your battles when dealing with someone with dementia, and I'm just not sure this is a battle worth fighting, as it's not like your father is going to get any better anyway, but will only continue to get worse.
So let the poor man enjoy whatever time he may have left on this earth, and you just get back to being his loving child instead of the carb police.

"if they explained instead it's for his health and preventing diabetes, he would likely be amenable to the diabetic ice cream."

Your father has dementia. I think preventing diabetes is the least of your worries. Have you really researched and read about what dementia does to a person?

Longevity with dementia is a curse because eventually his own body will stop being able to swallow, etc. Let him eat what he wants and to hell with this pre-diabetes nonsense his doctor gave. Does his doctor even understand that your dad has dementia and what dementia does? It sounds like he is also clueless.

Facilities are not allowed to withhold food from residents. Even my MIL in LTC with moderate dementia: I asked the staff to simply not put her dessert on her tray until after she ate some of the main course (because she was eating dessert first then not eating any nutritious food) and they told me they cannot do that, it's considered withholding food. She is not on any medical or restricted diet for health problems. It's a legal issue. Also, I can't imagine trying to manage the dietary issues of so many residents at once, and peopel who mostly aren't cooperative. It's also just not practical.

It might be a different story in MC. Please talk to the admins at his facility to get clarity and maybe a solution.

Laws re ALFs are STATE MANDATED. Look up diet laws for your state.
But know that in general asking for very special guidance is asking for a HUGE jump in fees.
In general ALFs are not held to federal law standards, only to state:
From the internet:
"Many state guidelines state that assisted living facilities may accommodate a special diet when the resident’s health care provider deems it necessary, while other requirements state that facilities must consider residents’ preferences."

ALFs are not nursing homes. They are not held to the same governmental standards. Recently we kind of "had this out" on Forum when someone claimed they DO have to obey laws. In one sense they do as regards FEDERAL laws, which are broad and general, but they often not subject to state laws. Most ALFs insist that a resident be at least somewhat cognizant, including ability to manage meals without depriving all residents of sugar, salt, condiments on the table because ONE resident cannot eat it, if you see what I am saying. An inability to do so could mean a move to memory care.

If you wish to know what their standards and practices are and what laws are involved do make an appointment or call administration.. They will explain what they can do and what they must do and what they DO do. They may even tell you that they are not, perhaps, the right facility for your loved one, and you should perhaps explore other options for his future.

There is also that fact that any "special care" will bump up the care levels (usually I through IV or V) exponentially, resulting in huge jumps in fees added to the residential cost of room/board.

As to what they do or do not do about varying diets? That would be something discussed upon admission and made clear in admission packets in most facilities. It is individual to the facility. Most demand a doctors evaluation and explanation of needs.
They would/should lay out exactly what can be expected and what cannot. Many good facilities do have low sodium or heart healthy or general diabetic meals for individuals. Some actually do not. And it is often up to the resident with or without help to make best choices on menus. In my brother's ALF he always asked for fresh salad at lunch rather than the corndogs that were putting weight on him.
So do make an appointment with the administration to discuss.

PS Really, as an elder with dementia, it is VERY unlikely that pre-diabetic has any meaning whatsoever. So consider discussion with his doc. Prolonging his life at this point isn't very realistic. Depriving him of pastas? Why? If he hasn't become diabetic by this point it is honestly so very unlikely that would happen. Or that it would claim his life. Your dad has already beat the odds and --as I have done--passed the "sell by" date. The rest is GRAVY. Why not make it the best tasting gravy he every had? Discuss with doctor.

Most ALs do not agree to follow dietary restrictions for residents. The whole idea of AL is that a resident is independent enough not to require a huge amount of care. Once they do, it's time for Memory Care Assisted Living or Skilled Nursing care. Why, if dad has dementia to the point where he's eating up to 7 sugar packets by themselves, is he not in Memory Care to begin with?

AL is private pay and gets to establish their own rules which are handed out when the contract is signed. So yes, it's legal for them to not provide certain services.

When my mother needed a mechanical soft diet for awhile after getting aspiration pneumonia, it's a good thing she was in Memory Care Assisted Living at the time as they were able to accommodate that diet. Had she still been living in AL, I'd gave been scrambling.

I'll tell you this, though. It's my opinion that elders with dementia should be entitled to eat whatever they want. They crave sweets especially with dementia. Their lives are already compromised horribly, why try to extend their lives with restrictive diets???? The only reason mom needed a soft diet for awhile was while she recovered her swallow reflex. I brought her junk food weekly, I didn't care how it affected her health. It was her ONE remaining pleasure in life.

Good luck to you.

I am so with Lea here. Dad should be in Memory Care if not. An AL is just what it says, it assists. A person needs to be able to do most ADLs for themselves. Maybe have assistance to bathe. Some people in ALs still drive can take a walk.

By law, the AL cannot keep Dad from doing what he wants. He wants real icecream, let him have it. He is prediabetic not diabetic. I agree that after a certain age and with Dementia in the picture, let him have what he wants.

The sugar packets do bother me. No one should be eating 7 pks. No one should eat 7 pks of a sweetner either. Actually, in sugar free candy, the ingredient used in place of sugar gives people the runs. I had to stop buying it for Dad. Aspartame can cause seizures.

Coffee contributed to her Gerd problem. Her Dr. told her to cut it out. Her AL was told not to give her coffee. I was there one day at dinner time to see an aide asking if Mom wanted coffee, I said no, she is not allowed to have it, I got a funny look from the aide. Mom was probably getting coffee everyday.

Interesting question. I am diabetic a follow a strict diet. The few times I have had to stay in the hospital I could not get a diabetic meal. They would serve lots of carbs and sweets. So most of what they served I declined. Even when I asked it fell on def ears. I think many institutions in watching budgets do not want to deal with special meals. Unfortunately there is nothing you can do. One option is to arrange her meals with an outside company who will deliver them to her. When I was taking care of my wife I found a few of them that specialize in that.

Unless you are right there to do it yourself - they (AL Staff) will not do it. Even when my daddy was in a group home the staff did whatever. I loved the group home but just an example of what happened: they called me and told me my daddy was wanting too much salt and his legs were swelling... I said look give him what he wants. The staff then said okay would you get an ottoman so that we can lift his legs as he sits. I said fine -- took me all day to find one that I could carry and get the same day. I bring it to the group home, I set up my daddy - telling him that he needed to keep his legs on this so important ottoman. The next day I arrive for my daily visit... where is this ottoman? in the corner. I thought the staff was going to place it so he could raise his legs, keep the legs from swelling... I was told - he refused. Bam! okay... well this was a test of hurry up get something so we don't have to use it when a client refuses! Dementia will do this! Your dad will probably be on meds soon for diabetes because he does not exercise and he WILL eat what he wants and the staff is too busy with other tasks to fight with your dad. Ask yourself is it worth the fight? I would rather have my daddy happy instead of fighting with him about setting up a @#mn ottoman that he didn't like.

Sadly, this is very common. Nursing homes, AL, and other congregate settings rely heavily on high carb foods to keep their food costs low. My mom has had T2 diabetes for as long as I can remember. She's had several instances of falls needing rehab and is now in an independent living apartment. The meals at all of them have been carb-heavy. There are options for those that can't have a lot of carbs but they would require the resident to choose those options. Not very suitable for someone with dementia or whose decision making isn't good. Most people in his situation are used to eating carbs and sugar and aren't likely at this point to want to drastically change their diet. If you are serious about this you could hire a companion for him to help him choose his meals.

If you're concerned about preventing diabetes, then your father doesn't have diabetes.
If your father had the potential to live many more years in comparative good health, I could understand the doctor's directive and see the point of being strict with his diet. Unfortunately, that's not the case.

Let your father eat the food he recognises while he can. It's too late now for your dad to learn new ways and change his diet.

Wow, I’m really surprised. I saw this question. I’m having the same issue when there is a respite for my LO it’s disgraceful really people in nursing homes don’t get healthy food so then they decline. It’s just wrong. Most of these places wouldn’t know how to serve a fresh fruit or vegetable. Leaving it up to a person with dementia is just wrong but what are you gonna do? My LO is diabetic, but it’s supposed to be controlled with diet and her doctor goes into the place where she is having a respite. I found Oreos in her drawer along with moldy food that she has taken and forgotten about and worse
she’s home now
This attitude about older people that oh well they’re old and they’re gonna die soon let them have whatever they want when they don’t really have the capacity to make good decisions is also wrong A high carb diet is really bad for their mind and just throws them into worsening health. Try to leave some fruit for him because the sugar from fruit is not the same as the sugar from processed carbohydrates with orders to give him that for a snack
If you can go there and take him some food and tell the Help to use it instead of the garbage they feed him. Maybe it would help some otherwise he’ll probably end up on Metformin.

Often in dementia, the brain is not getting enough glucose and sufferers crave carbs as a means of survival. It becomes important for us to step back at times and allow our loved one to enjoy what they can. Maybe the staff knows that your father needs his carbs for whatever bit of joy is left in life.

If your dad is put on a strict diet through his doctor, you need to file a complaint with his ALF. There are Ombudsman provided in the contract and documents you should have received.

As a person with inflammatory bowel disease who has a very low-carb, no-sugar diet, I'm horrified by some of these comments encouraging this man to live life & eat anything he is served. I have bloody, mucousy diarrhea if I cheat in my diet. So what if I were in AL? Should they just give me anything? No!!! I love ice cream, but I can't eat it without a bad physiological response. With diabetes, there's also a physiological response: not feeling well. Is that fair? I can't believe these responses.

My answer is not about legal but as my third time dealing with family with dementia the latest being hub after a brain injury it’s about the journey. The reality as we are experiencing is it doesn’t really matter. The dementia / Alzheimer’s is not going to get better but the journey will all end the same. In my husband case he has cholesterol issues but as a nurse we took him off statins and since his eating is erratic there are times all he will eat is chicken nuggets in ranch . Think of a picky toddler. Are being on the statins going to fix the cholesterol .. who cares he’s on his journey and only God knows when it will end. So if he wants chicken nuggets or fried okra or only eats a ham sandwich I’m ok with that. He’s eating and happy and enjoys it which in Alzheimer’s it’s those moments that are most precious .As one dr said if we look for things and find them then we have to treat it but will it change anything .. no. My FIL was type 2 and as the disease progressed he would only eat things that tended to be more sweet which is a tendency with dementia patients. No meds or diet restrictions were going to change his outcome so we stopped that fight. He was happier and enjoyed what time he had left. Once the family realized this they were able to make more memories for a lifetime and he felt doted on. His facility didn’t have condiments on the table but if they wanted another cookie or extra pudding or ice cream he had it. With my hub and as his POA I’m crushed to be on this journey with him but with caregiver support groups and mental health I know I’m not alone. I tried to control more in the beginning but all it lead to was anxiety and stress for me and a deep sense of loss and once I stopped trying to change what I really couldn’t I’m now trying to put my life back together and make the most of what time we have left. It’s the hardest thing I’ve ever had to do and am doing and please realize you are not alone on this journey . There is a book out that is helpful called “Finding Grace in the face of Dementia” in fact our whole family has a copy and found it a valuable tool to “understand “ what’s going on. Love on your dad for as long as he’s here… eventually the journey ends but the time you have with him will be more precious .

The doctor issued orders and they are in the best medical interest of the patient.

No, the AL cannot do whatever it wants. If they disregard this order what else will they ignore?

If the POA has been activated and you are the legal decision maker now, make an appointment with the AL's director and discuss this.

2 points.
1. I think that a person with dementia should be in Memory Care not AL.
2. The facility SHOULD follow ANY diet that has been ordered by a doctor.
If the facility either can't follow the doctor's orders or refuse to that should be reported to the Ombudsman and I would also notify his doctor that the facility refuses to follow his order.
I would also report this on the Medicare Website. They do take complaints and facilities are listed with they types of violations that have been found during inspections.

I would ask them if the doctor ordered a blood pressure pill to be taken each day would they make sure the pill is taken or do they document that the resident refused the medication. If that is the case who do they notify that the resident is non compliant with medication? And what is their solution.

LauraPOA: Your father should be in a memory care facility.

I think the clue is in the name - Assisted Living Facility. Such places exist to maintain people's independence. They are not in the business of managing people's lives or telling them what they can or cannot do. If anyone wants to ignore doctor's advice, they are allowed to do so.

If someone needs decisions made for them, then they need to live in a facility that can do that, not ALF.

(This is separate from the issue of whether it's practical or desirable to get a person with dementia to follow a strict diet.)

I agree with the responder who said it should be okay to give them what they want, their life is limited. Yeah, too much ice cream in one day is a lot of calories, add a few cookies, beef, etc, etc. BUT, they lived their life, let them enjoy it. Their life is limited. That's my theory. I did most of this with my husband when he was still living, who didn't know me at all despite being married 55 years. Hard to take, but my feelings, their life is limited anyway, give them what they want. They are still going to die. Let them be happy doing it.

Not a fan of AL. They will allow diabetics to have sugar, hypertensive patients to have salty foods, the one my mom was in (for a week) - even had a happy hour. Let's mix that with meds, shall we? Cheers!