An extremely low percentage of people I've spoken with in LBD support groups use assisted living or comparable variations. Normal?

My Mom was diagnosed with LBD in July 2020. This was after she just "fell off a cliff" in December 2019. We didn't know what was happening - stroke? psychosis? Her PCP ordered brain scans, which came back normal. He referred her to a neurologist, but it took about 6 months to get her in and finally get a diagnosis. By that time, we were sure we were going to have to put her in a facility, as she appeared helpless.
She ended up in a rehab facility after a fall. The rehab staff was wonderful with her. Before her release, we asked to meet with them to figure out how to move forward. When we started asking how to care for her since she was unable to do ANYTHING for herself, they informed us that she IS capable of doing almost everything and that she was manipulating us- she just liked being waited on.
She is rather a conundrum. She is still very sharp intellectually. She was a nurse practitioner who worked until she was 71. She is still able to draw on her medical knowledge, although sometimes she does get mixed up.
During the past 3 years, she has made a remarkable rebound from where we started. We watched her all but disappear during the first 7 months. She is in no way back to her normal self, but so much better. We have plateaus, drop offs, rebounds, plateaus again, etc., etc. We have actually questioned the doctor about the diagnosis, as she is not typical of everything we have learned and seen in others. He has assured us the diagnosis is correct.
She does require assistance with bathing, grooming, sometimes dressing, and meal preparation. But she is able to, with the aid of her walker, get up and use the restroom, get her snacks and beverages, put in a DVD, and so much more.
We do see a lot of behaviors that come with LBD, and have learned how to work through those. Mom is frustrated a lot. She is also frightened. She knows something is wrong, but she doesn't know what or how to fix it. She was always super controlling of everything in her life, and now feels like she has no control.
After my Mom was forced to put my grandparents in a nursing home, which turned out to be a terrible place, I promised my folks I would keep them in their home as long as I was physically able to. I retired early so I could move closer. Due to spinal disease, I am not able to bathe my Mom. My 89 year old Dad is also not able to do so.
After several trial runs, we were so blessed to find an independent caregiver who comes in 2 hours in the a.m. and 2 hours in the p.m. She was an EMT, as well as a nurse in a prison, so good medical knowledge. Delightful personality!
She gives Mom her bath, helps her get dressed, and does her hair for her everyday. She does her fingernails and toenails a couple times a week - Mom really likes someone "fussing" over her. She does daily excercises with her for strengthening, mobility and balance. Any time the weather is nice, she takes Mom for a walk. She changes Mom's bed linens every day. She prepares meals for them - she tries to give Mom some control by asking her, "what should we fix for dinner tonight?"
She cared for a parent with dementia, so is in tune with those behaviors, and interacts beautifully with both of my parents.
Although placing my Mom in a facility may still be on the horizon, at this point, it isn't necessary. My Mom got a long-term care insurance policy when my folks were still fairly young, which has definitely relieved the financial burden of paying for help.
It's a lot of work on me to fill in for the things the caregiver doesn't do, and occasionally I do have to take a respite to care for myself, but it works well.
For us, as long as my folks can be cared for and are safe, we want to keep them home. They have been in the same home for 48 years. I'm afraid they wouldn't do well if we moved them into a facility.
Our biggest factor in keeping them at home has been having a part time caregiver.
Sorry for rambling!
Good luck and God bless!

I think that those looking for support and brainstorming with others for solutions to any difficulties they encounter are more apt to be hands on caregiving, it's as simple as that.

I would say it depends, as do ALL dementias, on the level of loss, on the family involved and on the ability to maintain independently.
My brother had LBD probable early diagnosis, and he opted for an ALF. He was capable of doing much, but he worried re his future and his balance was very poor.
He made me his POA and Trustee of his Trust, had me handle all his bill paying and etc. while he maintained a small personal account. He chose a wonderful place in So. Cal while I remained in No Cal.
He thrived, attending movies, events, and etc and only got better in care and without worries of handling finances, home, and etc until his death of another cause before Lewy's could progress.

People you meet in support groups are still functioning. One I met on a FB group lectured around the country still. Lewy's is a bit unique of the dementias as, in early stages, it can come and go a bit more than other dementias which are either a slow slide down or a stair step down, with little recovery at all.

In later stages I think you aren't hearing from support groups and I would guess most sufferers are in care.

Good Morning,

My mother has Lewy Body Dementia and with the right medications you can somewhat "control" some of the symptoms. Mother is home and we have tried everything--short term rehab, home care, moving to a 1st floor unit, Up Walker Lite, quality shoes, structured routine, 4-hour weekly respite care, you name it.

There really isn't a lot out there on Lewy Body. The only people that talk about it are the people who have had loved one's with the diagnosis. Mother sleeps a lot, and her levels of alertness fluctuate. The peripheral vision was the first to go and I immediately took away the keys, especially because she was on blood thinner--switched from Warfarin Coumadin to Eliquis to eliminate the INR blood draws.

A day facility does not allow mother to lie down so it's not an option. I just bought a new sofa so mother can relax and nap in comfort. The place is well lit, no area rugs and streamlined. Mother's gait was off at the beginning but I had physical and occupational therapies along with speech therapy at home and at the respite facility. An RN was on duty as well

I weigh mother each morning, take her temp and blood pressure daily.

Mother is in a hospital bed with 1/2 a railing. There is a shower chair and also railings around the toilet. White cotton underwear and a shot of cranberry juice daily. This is a beast of a disease that you have to keep on top of.

Some good book recommendations: A Caregiver's Guide to Lewy Body Dementia by Helen Buell Whitworth & James Whitworth and also The 36-Hour Day by Nancy L. Mace, MA & Peter V. Rabins, MD, MPH.

Lewy Body Ireland has online conference videos on YouTube. I'm like a sponge to learn everything I possibly can--keep tv to a limit, sentences short, give them things to do (folding facecloths, snapping string beans, etc.).

Sequencing of directions can be off or too many directives can confuse them. Keep it short and to the point. The color lavender calms them. Mom likes music and it's not her memory but it's executive functioning skills.

For a short time she was on Palliative Care but (for now) no longer meets the admissions requirements. The plan is to keep her home as long as I can last.

The Pandemic magnified the symptoms but some things did turn around for the better. A Geriatric Neuro-psy doc every 6 months for a tune-up. It's not going to be a happy ending for my mother but there are issues too--A-fib and lymphona (non-hogdkins) usually by the time you hit mid-80's there are multiple things going.

I pray the Lord takes her peacefully in her sleep as I put her handkerchief and rosary beads underneath her pillow every evening and tuck her in like a little kid. She tells me when I can turn off the light.

I run this place like the army, I have to keep up with everything.

I would not care for someone suffering from LBD or Frontal lobe Dementia. Both are tend toward aggressiveness and violence. And caring for them at home maybe the families only option because if these traits don't respond to treatment, no AL, MC or LTC will except them. They need to consider the other residents and their staff.

I believe that because Lewy Body dementia is one of the more aggressive of all the dementias with a life expectancy of just 5-7 years that probably most do tend to keep their loved ones home.
I have known several ladies in my caregiver support group that did just that whose husbands had LBD.
Now of course they had hired help coming in to assist them especially after their husbands became bedridden, but it certainly is doable with the proper help.
The bottom line with any of the dementias though is that whatever choice is made it has to work for both the caregiver and the one being cared for.

Count us among them. My wife was diagnosed with LBD in 2019. I am her sole caregiver and we're remaining in our home just as long as I can physically manage.

I'll assume the day will come for a change; until that time, we fight the demon together. And, she does so with grace every day.

First, there is no definitive diagnosis of Lewy Bodies Dementia available while the patient is alive. (Diagnosis and Prognosis of Those Living With LBD (lbda.org) Second, every likely Lewy body dementia patient is unique in progression and expression. Third, caregivers who are caring for dementia patients are more likely to participate in support groups. According to a recent study conducted by University of California at San Francisco "Most Seniors with Dementia Live at Home, Despite Pain, Anxiety, Poor Health | UC San Francisco (ucsf.edu)" In this study, researchers found that “Contrary to popular belief, most older Americans with advancing dementia remain in their own homes – many until they die. But a new study by researchers at UC San Francisco has revealed that this population may endure more pain and have more complex or unaddressed medical needs than their counterparts in nursing homes."

"In the study, researchers compared the medical characteristics of 728 adults over 65 with moderately severe dementia, in three settings: the participants’ own homes; residential care, which spans the spectrum of retirement communities from those offering support at extra cost to assisted-living facilities; and nursing homes, which care for people unable to attend to their most basic needs. . . .”

Yes, according to formal research studies performed by professionally trained analysts, more than 60% of dementia patients remain home. The decision to care for patients in-home is primarily driven by financial and emotional factors, not patient's quality of life.

Everyone I ever met who had a family member with LBD started out keeping them at home until they became aggressive and then placed them for everyone's safety.

Ragnar49: My sister in law's mother suffered from LBD and was cared for at home even when her illness got so bad that she suffered auditory hallucinations, one of which was to place her bible on the sidewalk as she 'heard' a woman tell her to do so.