Re: Noreen -- suggestions for an LBD-friendly facility

[Guest guest]

 

, I certainly wish that could happen for all dementia patients.  Perhaps,

someday.

 

Here in Topeka, a woman whose mother had AD, was not happy about the NH

experiences with her mother.  After the mother died, she started a home for

dementia patients based on  homelike setting with only about 10 in residence. 

She now has two, one for mild-to- moderate and one for severe.  I think the

nurse/patient ratio is probably 1-3 or 4, maybe less.  It isn't too much more

than NH costs, but she mostly takes private pay and possibly a few Mcaid if she

has room, but she does have a waiting list.  I talked with her before my husband

was placed, and she didn't have any openings, but she did call me after he died

saying she would have a space.  Of course, that was too late.

June Christensesen (husband Darrell dx'd AD 1999, possible LBD 2006; died Nov.

2006; autopsy showed both).

Subject: Noreen -- suggestions for an LBD-friendly facility

To: LBDcaregivers

Date: Monday, August 3, 2009, 10:46 PM

 

Noreen,

I wish I had the money to design a facility for patients with LBD like my mom.

Just from what I have seen of my mom, who has LBD, none of the locations where

she has been have been appropriate for her. I saw a couple places that I thought

would have worked, but we couldn't afford them.

I think people with LBD would do better with shorter halls coming off a central

area that was more like home. Have something in the central area that seemed

like a kitchen, dining area, den, living room, then bedrooms down shorter halls,

with no more than about 6 bedrooms down each hall, with only one gender on a

hall. They sometimes get fixated on sex, and there is less suspicion on the part

of female residents if the male residents are in rooms that are not on their

hall. They also need it quiet at night -- no late night TV or loud boistrous

talk on the part of the staff. There is a wonderful place in Wilmington NC like

this, but we couldn't afford it.

They need less clutter, and easily identifyable landmarks. Each room should not

be painted the same color, or they will all look alike to the person -- how do

they distinguish their room?

You need to have a minimum of sharp corners, things they could get hurt on if

they fall or stumble. Floors should be padded if possible. If a person is prone

to falling, a cement floor covered with tile is deadly. Bathrooms can be

dangerous places. Sink or countertop jutting out -- scary. Toilet seat probably

needs to be raised, and arm rests on either side are good. Central place for

showers and baths may be better than one in each bathroom.

I think people with LBD also need a larger staff to resident ratio. Here are my

reasons: They need more attention. They need to take naps when they get

exhausted mentally or physically and need to get away from it all, then they

need help getting back up, etc. Often they just need help finding the bathroom

and the toilet. They may accidentally urinate in a trash can or a clothes hamper

because they get confused. They need to have a bathroom close at hand always.

Also, since so many of them are prone to fall, they need to be watched or

assisted more. Otherwise they will either have to be restrained all the time to

keep them from falling or they will fall a lot. The one place where my mom

wasn't restrained, she fell once or twice a day. But when she was restrained all

the time at the place before, it drove her nuts. Now she is weaker and more

passive but still wants to have the lap belt off, yet I fear for her falling if

they take it off and don't watch

her like a hawk. People with LBD are also in danger of choking on their food,

and with Parkinsonian simptoms like tremors, etc., they often need help with

cutting their food, food falling off their fork or spoon, etc. They may need a

large bib, one that covers their entire front and lap, because they will drop

food, but they hate to have their clothes messy. They will need help with basic

things like brushing their teeth, because they can't maneuver their hands and

wrists to brush as well. Even spitting can be problematic, and they may miss

their target and get it all over themselves. They need to be able to get

outside, but they need someone with them to make sure they don't fall or wander.

My mother gets lost. She goes down a different hall and is totally disoriented.

She thinks she is lost downtown and can't find her way home. She will tell me

she got lost downtown and no one would take her home. If an occupational

therapist doesn't take her back to her room after therapy, she may wander the

halls and think she is lost in town, so she doesn't want to go to occupational

therapy because they don't take her back home.

She has no way of even being able to remember her room number, so shorter halls

would really help. Often when I take her out, when we come back she doesn't even

recognize the place. She doesn't even recognize her room at first when we come

back from a drive. Fortunately, she has an old quilt on the bed that her mother

made for her, and that helps her to see she is in her own room.

I think most people with LBD would be better off in private rooms. My mom has no

sense of what is and isn't hers. If she sees her roommate get potato chips out

of a drawer, later she will go after those potato chips -- with no idea that she

is taking what isn't hers. Her roommate is a former CNA whose mind is fine but

is in failing health. She is so good to my mom and is the only roommate my mom

has had that my mom has responded to, but it took my mom months to even figure

out that she was her roommate. Past roommates have not worked out. One had

Alzheimer's and cussed at my mom and even pushed her around, and my mom would

fall into the wall -- it was horrible. Often my mom thought her roommate was a

nurse who was lazy and wouldn't help her.

Seroquel has helped with my mom's hallucinations, but it seems that blank walls

are not a good thing. They turn into " movie screens " for the hallucinations. We

have put pictures all over the walls, and that helps break up the space so her

mind doesn't have a place to project the terrifying hallucinations.

She also doesn't do well with TV or noise in general. It confuses and agitates

her.

They don't process words fast, so you need to talk to them more slowly, with

shorter sentences, and give them time to process it, not just keep talking.

Sometimes they can't process figures of speech and have to have very concrete,

simple language.

They need respect. Their thinking comes and goes, but they are very sensitive to

someone laughing at them, talking condiscendingly, etc.

I will be glad to talk to you about this more, but I think it is something that

needs to be addressed, and I appreciate you caring.

Gurganus

>

> I am a fairly new lurker but have already learned much from the experiences

that have been posted. Here is my background - I work for a company that has

ALF's that are designed for residents with Alzheimer's and vascular dementias

and the foot print of the building works miracles for many of our residents

along with the structured programming that we provide. However, as you are well

aware, the same requirements for LBD or even frontal lobe are very different. We

have moved in several residents with LBD and/or Frontal lobe and have been

unable to accomodate their needs. Here is a summary of what we have found and

what we have observed.

>

> 1. When they are moved in and given time to settle in with staff, other

resident's family members, and other residents before another move in occurs

there is a much greater chance that it will be a successful move in. If they are

moved in too close together or we get too high of a percentage we start having

problems because their behaviors are so different from our usual population.

>

> 2. Primary problems with move ins seem to be that they are always searching

for smaller spaces - entering other resident rooms, walking into a restroom and

being unable to find their way out, walking outside in our enclosed backyard

appears to be too much for them, etc. Is this a typical problem? One competitor

that I toured locks all the bedroom doors during the day to keep residents in

the central dining room/living room. That is not our practice but wondering if

perhaps it would be better for the residents.

>

> 3. Even in the professional setting we have medication issues. Is there a list

of medication does and do not's that we could use to discuss with our medical

advisors?

>

> 4. Is there a physical environment that has been found to work better for

their needs? For supervision purposes smaller spaces look like an answer but we

have always prided ourselves on our ability to give back as many normal adult

freedoms as possible to those that wander and 'need to go home.'

>

> Any comments welcome

> Noreen G

>