Expert: Mary Gordon - 3/15/2009

Question
QUESTION: My mom, 88 years old, was recently doing pretty well in an adult home/assisted living environment.   She fractured her hip, and is now in rehab at the same facility.  I see a decline, not only physically, which is to be expected, but she is saying people are giving her drugs, ripping her clothes, etc.  She is confused sometimes about where she is, and even has a hard time discerning a dining room at the facility.   She also tells me the staff is rough and savage with her. (Her roommate, who is very with it, states that is not so, although the staff can be hurried at some points they are not abusive) How can we tell if it is right for her to go back to her previous setting, albeit it would be a slightly higher level at assisted living, or that she should stay at nursing home level?   Will assisted living take her back if she is removing her clothing at night and trying to wander a bit?  I do not think so, but wondered if you had any insight.   She is typical of dementia patients, remembering past with great detail but asking for things around her that are in her other room at the home (I don't think she really knows where she is all the time) Or forgets her room mate who has been there 3 weeks when she leaves the room and comes back.   Do you think aricept or such meds are something we should think about?

I work for the state health dept (regulator) and visit almost every day at the facility  -- so make everyone aware of that.  

Emotionally, this is awful to know that this is probably the last step for my mom.   However, in practical sense, at her age, I can't provide for her safety in my home and neither can my siblings.   so all I can do is make sure her environment is the best it can be, visit a lot and bring her things she still enjoys -- But I still struggle with thinking that maybe assisted living is something she could go back to??  Can you give any advice?

ANSWER: Hi Norma, she will probably come round a bit from where she is, but not back to where she was before the injury and surgery. All you can do is watch and wait. Whether or not she will be able to return to assisted living is almost academic. It is time to shop for a specialized dementia unit. If the facility she is in doesn't offer secure dementia care, see what else is out there in the area.

Generally, if she is able to get walking again, she won't really need the heavy care associated with the nursing home level at this point - although later in her dementia, it is likely she will. However, she will need more supervision and support than is generally available in an assisted living facility.

Just to give you a long winded illustration, we went through two hip breaks with my mother in law. The first was very early in the illness. We knew she was a little forgetful (her only real symptom), and appointments had been booked with specialists. However, she broke a hip before the actual diagnosis. Before surgery, she had been managing on her own, looking after herself, shopping, cooking, cleaning, paying her bills, having a social life, getting to appointments on her own.

Post surgery - a shocking change. She was so completely disoriented, forgetful and loopy that the hospital called in a social worker to talk to us, because they wouldn't believe our description of how high functioning she'd been prior to the injury. They wanted her to go straight to a dementia ward. They thought we were in complete denial. Over the subsequent months, she did come back a long way, but never to the point she'd been before she broke the hip. She was at least able to participate in therapy and understand the purpose, so we did get her walking.

We were able to get her back into her apartment, with supports (we had a visiting nurse, a visiting physiotherapist, "meals on wheels", a housekeeper five days a week, and us, 10 minutes away and over there several times a week). That lasted for a year.

She then went to assisted living. That lasted another year. It ended because she needed more support and supervision than they could offer. She started getting up at night and wandering, and getting lost in the building (a janitor once found her at 3 am in the furnace room). She couldn't get herself to meals or activities on time (they had to go and find her and escort her). She needed complete help with dressing and bathing or she'd wander around half dressed or in layers of inappropriate clothing. She couldn't operate the lock on her door. They couldn't provide adequate security to guarantee she wouldn't get out of the building and get lost in the area (or worse, in the ravine that was close by). They were just not set up to keep an eye on her 24/7.

Next stop was the secure Alzheimer's ward, which was a locked, specialized ward. There were security keypads on the elevators and stairwells. There was special security and keypads in the main lobby as well, as well as 24/7 staff by all the external doors.

It was tremendous, because it was really set up to look after the unique needs of people in mid to later dementia. They had activities and programs tailored to the abilities of the residents, so my mother in law could actually participate and enjoy them. The staff really understood what they were dealing with, including agitation and other behaviors, and were wonderfully kind and compassionate. The entire time she was there, she only needed a little sedation once (she got very upset for several days, none of us could figure out what it was from, and she was miserable, so we allowed them to give her a little something to settle her down, and then it was discontinued). After two years in this unit, my mother in law broke the other hip - she stood up from a chair, and without taking a step, went down on a carpeted floor. No matter how we tried post surgery, we couldn't get her walking again, so that was the end of the Alzheimer's ward. She also had the common cognitive drop post surgery that many dementia sufferers experience. The requirement on the AD ward requirement was only that the patient be able to stand and walk a bit, so they could get themselves at least from a bed into a chair, and that was now beyond her.

With the end of the walking also came complete incontinence -so, the next stop was the nursing ward, where heavy physical care was available. She remained there for the last two years of her life. The nursing ratio was very high on this ward, because of the physical demands. She also needed frequent repositioning to prevent bedsores, and a lot more one on one time for feeding, dressing, bathing etc.

I know this is long and meandering - but I guess the point is - think about this strictly in terms of her current abilities, right now today. No wishful thinking or rose colored glasses.
Be pessimistic and assume this is as good as its going to get, so you make plans that are right for now and the next phase of decline.  If you return her to assisted living, how long will that last? The assisted living area should be able to articulate exactly what they need a resident to be able to do. This is about safety. Do they have the security available to keep a wanderer contained in the facility and safe? Can they manage a person who has behavioral issues like agitation? Can they handle a person who will need prompts and assistance to get to meals ? Can they deal with her need for total supervision with dressing and bathing? Is she safe with access to hot water taps ? Do they have activities that are suitable for her to participate in? Can they provide appropriate meals and supervision is she starts to have trouble chewing and swallowing, or needs help with feeding ?

Below my signature I've pasted the generally used definitions of the different types of care.

On the medication front, yes absolutely, give aricept a try. I'm a bit surprised she isn't on it or one of the other similar meds already (the most common are aricept (aka donepezel), exelon (aka rivastigmine), reminyl or galantamine and exiba or memantine (aka namenda).    These drugs can slow down the progress in many people (about 60%), and keep them higher functioning for longer. Some - like aricept - are cholinesterase inhibitors that prevent the breakdown of acetylcholine  a chemical messenger important for learning and memory. Some -like memantine-  work by regulating the activity of glutamate, a different messenger chemical involved in learning and memory. The best bet seems to be a combination of the two.

If you look at this as right now being as good as it gets, this is when you want to preserve what she has, to give her the best possible quality of life,  because what comes later is grim. If you try these drugs, you may even find she perks up enough to contemplate a return to her assisted living accommodation - but keep in mind, this is a temporary fix.

Hope this helps. I've included this link to an article about the experience of Alzheimer's that has nothing to do with your questions, but its such a good article, I thought you would be interested.

http://www.alzheimer.guelph.org/downloads/12%20pt%20Understanding%20the%20Dement

Mary G.
Toronto

Nursing homes
For years, nursing homes were the only choice for people with Alzheimer's disease, but these facilities often don't specifically meet their needs. Nursing homes were created for people who were not cognitively impaired but required some functional assistance because of medical problems. These facilities are typically hospital-like and don't provide the general supervision and space that enable a person with Alzheimer's to move about freely.
Special care units (SCUs)
Many nursing homes have organized dementia care units that are located in a separate wing of the facility. These special care units (SCUs) often offer patients with dementia homelike environments and activities and programs conducted by specially trained providers. Ideally, dementia programs include small-group activities geared toward different levels of ability, short programs, and activities arranged by functional or cognitive ability levels. These facilities may also include special design features, such as secured exits, small dining rooms, single-occupancy rooms, or special indoor or outdoor areas for wandering. Currently, however, the care provided in such programs varies widely because there's no standard definition of what constitutes an SCU. Therefore, if you're considering this type of long-term residential care, visit the facility to find out what services and programs it offers.
Assisted-living facilities
These are typically large complexes with apartments or townhouse units that offer communal dining, assistance with personal care, monitoring of medication, and housekeeping services. Many offer special residences for people with dementia and features similar to those offered in special care units, without the level of ongoing medical care that's available at a nursing home.
Retirement communities
Sometimes called "life care centers," retirement communities offer several levels of services so that as the needs of the resident changes, he or she moves within the complex to receive more specialized care.



---------- FOLLOW-UP ----------

QUESTION: Thank you for your reply, Mary, I really appreciate it.   Mom is not going back to assisted living, she is just too weak and frail.   Sometimes she is clear  -- remembers what happened yesterday and what is going on -- and other times she rambles about her nightgowns being tied to the furnace pipes and that is why they are missing.    I just go along with her when those moment happen, no use in trying to correct.  I just try to enjoy some of the time we have.  
She had been diagnosed with an aortic stenosis at her recent hospitalization -- probably had that for a while although she went to the doctor regularly.   Do you think that has anything to do with the dementia?  I would think it would have to do with her tiredness -- she practically sleeps all day.   The home has made a follow up appointment for her with a cardiologist, but I won't put her through another surgery.   

She is not on a special care wing, however, the workers have gotten to really like her where she is, they all can tell she used to be a teacher, and I happy as she is very close to the round desk and the staff often keep her out there with them so she can see what is going on and they can keep an eye on her.  

Any info about the heart issue is appreciated.

Answer
Hi Norma -

Because of the use of magnetic resonance imaging (MRI) scans researchers know now that dementia is greatly influenced by blood flow to the brain - no big surprise there! Reduced flow and oxygen levels results in brain damage. Lower cerebral blood flow can be due to heart disease or stenosis (narrowing) of cerebral (brain) and carotid (neck) arteries.

Here is a good article on aortic stenosis.
http://www.medicinenet.com/aortic_stenosis/article.htm

Her tiredness could be from her stenosis - or it could just be from her brain injuries. As you know, as many of the progressive dementias advance, it's very common for the person to be less and less alert and sleep more and more.

In terms of her stenosis being missed by her doctors in the past, from what I understand, in some people, the early signs of aortic stenosis can be difficult to detect and diagnose because the person has no obvious symptoms. Your mother may be one of those - see this article, and scroll down to what it says about aortic stenosis.
http://drgreene.mediwire.com/main/Default.aspx?P=Content&ArticleID=119494

It is absolutely possible for her to have more than one cause of dementia going on at once, so yes, she could have both Alzheimer's and a circulatory/vascular component. After all, the brain is very delicate, and in the frail elderly with a constellation of health issues, it isn't hard to imagine the situation where what is going on is very complex.

There are a number of "vascular" dementias - and when a person has more than one cause of dementia at the same time, they sometimes get described as having a "mixed" dementia.   

It is often very hard to figure out exactly precise causes of dementia are, and sadly, many of them not only overlap but are equally relentlessly progressive.  Medical science is still pretty short of answers or treatments. I'd certainly ask the doctor if her cardiac issues may have contributed to her cognitive problems - but be prepared for a shrug - not because they are uncaring, but because they have very little to offer her - even more true since she is quite elderly and frail. When you come up against the limits of what medical science can accomplish, the root cause is almost academic.

I'm thinking of you and your mom. Sounds like you have good care for her, which must be some comfort. I know all this uncertainty is very hard to deal with - you want the best for her and you want to know if there are ways to help her.

Mary G.