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Should My Loved One Be Taking the Alzheimer's Medicines?

By Carole B. Larkin

March 6, 2013

Over the years my clients have asked me, “Should my loved one be taking any of the Alzheimer’s medicines?” My answers have differed depending on how much I knew about the medicines, the relative costs of the medicines, and how much research has been done on the effectiveness of the medicines. Here is what I’m saying currently.

There are only five medicines that the FDA has approved for treatment of Alzheimer’s disease. The first one approved isn’t prescribed very much anymore (Cognex). None of the medicines cure the disease. None of the medicines stop the disease process from continuing long term, though they slow the progress of the disease for a period of time. The current time frame for slowing the disease has been estimated to be between 18 months and 36 months depending on the individual. The medicines may hold the memory loss steady and/or positively impact some of the common Alzheimer’s “behaviors,” meaning anxiety, paranoia, aggressiveness and other “negative behaviors.” The current estimate is that about 30% of people who are taking the medicines are helped by the medicines, but 70% are not helped by them

Alzheimer’s medicines approved by the FDA for early stage are:

Medicines that increase the effects of the above Alzheimer’s medicines are:

Medicines that decrease the effects of the above Alzheimer’s medicines are:

Alzheimer’s medicine approved by the FDA for middle-late stage is:

Medicines that interact negatively with Namenda:

Researchers and a number of neurologists have recommended that patients with Alzheimer’s take one of the medicines for early stage and the medicine for middle stage together (during the same day), if they can tolerate the side effects of the medicines. The most common side effects of these medicines have to do with the gastrointestinal system, such as nausea, vomiting, stomach pain, and diarrhea. There are other side effects as well. Many caregivers, when faced with one or more of these side effects appearing in their loved one after just a day or two, abandon the attempt to use the medicine. But It may take up to several weeks to build up enough tolerance to the drug so that the side effects stop. That is why doctors titrate, or build up the level of the drug slowly (from 5 mg to 10 mg for example). While it is understandable that people don’t want to see their loved one suffer with the side effects for very long, it could be that the medicine is not given a chance to build up to high enough levels in the system to do its job. Maybe that’s why there isn’t a higher percent of effectiveness. That could be a new avenue of research!

Also, for a percentage of the population (in the USA) the cost of the medicines enters into the decision whether to try these medicines or not. Currently all of the medicines for early stage have gone generic, therefore greatly reducing the cost of the prescriptions. The drug for middle stage and later is due to go generic in 2015. Perhaps not everyone buying these medicines knows this, and is still paying for the brand name. I hope not!

So, after all that information, the central question still remains. Should my loved one be taking the medicines?

Most certainly they are worth a try (meaning having the person on the drug for 2-3 months) if a couple of conditions exist.

·         It’s early in the disease progression.

 

One problem is that many people don’t recognize the disease soon enough, or are in denial about the existence of the disease in their loved one, so that the opportunity for the early stage medicines to work is already gone. The medicines work on living cells, not on cells that are near or at death. The person may have so many dead cells in the brain that giving medicine to the live ones is essentially too little, too late. When that’s the case; what’s the point of spending the money on drugs, no matter what the price of the drugs are, cheap or not?

 

Another problem is actually the reverse of non-recognition or denial of the disease process. Many people think that their loved one is later in the disease than they actually are. Because they don’t know much about the disease, they think that early signs of the disease are actually middle or late signs of the disease (for example: asking questions over and over again, having trouble paying bills or taking medicine properly). The caregivers mistakenly think that their person is “too far gone” and won’t even try the medicines. If the caregiver educates himself or herself as to what the actual stages of the disease look like, or conversely takes their loved one for neuro-psychological testing on a yearly basis to have a professional determine where in the disease they are, then the caregiver could make a more informed decision when determining whether to give their loved ones the medicines or not.

 

·         If the caregiver or person with Alzheimer’s can afford it.

If buying the Alzheimer’s drugs, means that the person can’t afford heart medication or thyroid medication or medication for breathing, well by all means don’t buy the Alzheimer’s medicine! If buying the Alzheimer’s medicine means there isn’t enough money for food, rent, utilities and other basics of life, of course the Alzheimer’s medicines shouldn’t be bought. First things first! If there is any confusion on this point, just Google “Maslow’s hierarchy of need” and look at the bottom levels of the pyramid.

 

Then, if the person is already on one or more of the drugs, the question becomes, when should he be taken off of them?

·         Because the estimate of how long they do well on the drugs is currently between 18 and 36 months, you could try it at the 3 year mark. The only way you know if the drugs have been doing any good is if when they are taken off the drugs, they take a sudden and sharp downturn in cognition (as expressed by things they are able to do for themselves, like dress, or feed or bathe themselves) and or memory. With the downturn you’ll know if they were being helped by taking the meds, but even if you put them back on the medicines again, they will never return to the level they were at when they were taken off the drugs. Quite a dilemma for the caregiver, I know. That’s when the caregiver should know what stage of the disease the person is at when they were taken off the drugs. If they are at the late stage, it just may not be useful to even attempt to put them back on the drugs. That again means either education on the caregiver’s part or neuro-psychological testing.

 

·         And if the caregiver or person with Alzheimer’s can afford it.

Everything I said before bears repeating, plus the fact that there will be more medical costs awaiting the person with the disease than there were before. That’s the nature of this disease. Costs for physical ailments do rise as the disease goes on either because the cognitive problems have caused a deterioration in the person’s ability to be self aware of the things that need to be done for their other illnesses (like comply with a prescription taking regimen) or because the disease itself can cause failures in other organs and body systems, in the late stages.

·         Finally taking someone off the Alzheimer’s drugs inevitably involves the caregiver’s inherent ability to take risks themselves (as the decision maker). Also the caregiver needs to be self aware of their own tendency towards creating guilt in their own minds, no matter whether keeping the person on the meds or taking them off the meds.

 

·          Since there is no clear right answer to the taking off/putting back on answer, it seems to me that the best a caregiver can do is learn as much as possible about the disease and about the med(s) their loved one is on, make their (informed) decision, own that decision, and then grant themselves grace by saying, “I’m confident that I made the best decision for my loved one I could have, at the time.” Because you did…

Contact Carole

 

Expectations of the Person with Alzheimer's

By Carole B. Larkin

July 18, 2012

One of the definitions of the word expectation is: a standard of conduct or performance expected by or of someone.

We all have expectations of other individuals based upon the demeanor and behavior that they have shown us in the past. Yet, in day to day caregiving of a person with Alzheimer’s or another dementia, having expectations of that person can be either a blessing or a curse, and frequently both blessing and curse.

Early in the disease, many times before we have fully realized that there is a disease process present in our loved one, and many times after we have discovered or have been told by a doctor that a disease process is present, we have expectations of our loved ones that many times cannot be fulfilled.

We base our expectations on abilities and capabilities that they had in the past, and now, may no longer have in the present.

Some of us continuously challenge them to do things that they can no longer do on a routine basis. It happens much of the time with short term memory issues.

We say to them “Remember?” as in “I saw you yesterday. Remember?”

When they don’t remember, that means that you have pointed out to them that they are deficient, or “less than”. They are embarrassed and ashamed. Please don’t hurt their feelings; just stop using the word “Remember”. (A curse) Please stop EXPECTING them to remember, but if they do remember, then be pleased and happy they did. (A blessing).

Some of us try to coach them into being able to do things that they could do in the past again. We try and retrain them, and then test them on the retraining, much as we would do with a child that is in learning mode. The fact that their brain is damaged and sometimes can no longer take in or store the teaching that we are currently doing, doesn’t register in our brains.

They are actually in the unlearning mode, unfortunately.

We insult them by EXPECTING our teaching to “take” and becoming exasperated when it doesn’t.

The hippocampus is no longer consistently registering and filing the information to be retrieved later that you have just given them. We should not routinely test them immediately after coaching, as we are prone to do by habit, (a curse) but instead, we should compliment them when they initiate an attempt at what we’ve taught them and are successful. There is no implied rebuke if we only reward success and ignore failure. (A blessing)

And yet, we don’t want to go completely the other way either.

Expecting that a person living with dementia can’t do anything promotes faster loss of their current abilities and ensures their increasing dependence on you. It zaps their self esteem and can lead to depression.

What to do?

How about trying the best to ensure their safety? If you could scout the environment for things that could go wrong in the hands of someone who doesn’t have full capacity to anticipate the consequences of their actions (making something on the stove and forgetting to turn the stove off), or remembering to do the next step in a task that has more than one step in it (closing the front door, but forgetting to lock it).

Dementia proof the house the best you can, to try to ensure as much safety as possible.

Yes, things can and will happen that you never expect to, but if you make a real effort to look at the house as if you had an unruly toddler who was unusually tall, you may be able to come up with more ways to keep your loved one safe.

Then with you physically there, and having “eyes on” your loved one, you can allow them to try things. They may be “more there” than you expected, and how wonderful would that be for everyone involved. Your loved ones success is immediate cause for celebration, so please praise and celebrate them!

Oh you say, “So much easier said than done.” Yes, yes, I know. The abilities of someone living with dementia change from day to day and even hour to hour or minute to minute. At times, we really don’t know what to expect from them. And that is one of my points here.

If you don’t EXPECT things from them, then you can’t be disappointed, angry, hurt, etc… when they don’t live up to your expectations! They are truly doing the best they can, given the disease they have.

However, if you don’t EXPECT things from them and they do more, then all are pleased. There is no downside to losing your expectations. Recall that we’re the ones who have the ability to change our thought processes, and so can drop our expectations in order to benefit our loved one’s self image.

Allow or promote as much independence as possible for your loved one within an environment that you have previously changed into a safe, controlled environment. This will give them the opportunity to “shine”.

Please don’t attempt to control your loved one, instead try to control the environment in which they operate (as much as is possible). Now THAT’S a win-win situation.

Contact Carole

Why Does Grandma Wander?

By Carole B. Larkin 

June 11, 2012

I am now a CERTIFIED TRAINER of P.K. Beville’s thought changing, life changing Virtual Dementia Tour experience. P.K Beville is the Founder & CEO of Second Wind Dreams, a non-profit organization that focuses on innovative educational programming and dreamweaving for elders (you can view her video interview with eCareDiary.com here). This is the most revolutionary teaching tool I have ever seen for caregiving for a person with Alzheimer’s or other dementia. 
Once I went through the tour a few times and had conducted the wrap up/teaching session at the end of it another few times, I knew that I had to carry this tool to all caregivers I could reach. So, I contacted P.K. and asked if I could join her next class. With an affirmative answer, I went to Atlanta, Georgia and participated in her intensive trainings for facilitators and certified trainers. Now I can train not only family caregivers and professional caregivers from home health and home care companies, all forms of senior residences such as assisted livings, memory care communities and nursing homes, but also many other professionals such as emergency medical technicians, firemen, policemen, doctors, nurses, social workers, and the like. Even better, now I can train them to be trainers themselves, so this knowledge can spread even further. I feel fortunate to be able to be a part of this magic.
One of the biggest insights I gained from the training is that people with dementia (especially in middle stages) are not engaged in illogical “inappropriate behaviors” when they do things like wander or pace aimlessly, shadow their caregivers to distraction, mutter to themselves, ask the same question endlessly, or any one of a number of other actions that drive their caregivers to distraction. What they are doing is engaging in “coping” mechanisms to deal with their lack of knowledge or direction in the best way they can at that moment.
The Virtual Dementia Tour participants are garbed up in a way that gives them the experience of having dementia. Once garbed up, they are asked to do several simple tasks. Few are able to accomplish even half the tasks requested of them in the time allotted (plenty of time under ordinary circumstances). Their senses are altered; their brain is set to a confused state by design. They are not able to process or make sense of information given to them to accomplish the tasks they are given to do. Then they are led to the area in which the tasks are to be completed.
What happens then? Perfectly healthy people who five minutes before behaved “appropriately” start doing what we call “inappropriate behaviors”, automatically, all on their own! They may wander around aimlessly, knowing that they are supposed to be doing something, but because they couldn’t hear or couldn’t remember what tasks they were told to do, they wandered around looking for something to do, anything to do, whether it was the task assigned to them or not. Others may stand frozen in the room, not knowing what to do and afraid to do anything because it might be the “wrong” thing to do. Others may see someone else in the room and start following them around to do whatever the other person is doing, figuring that the other person knows what they are doing, so it must be the best way to get things done themselves. Remember, just five minutes ago these were fully functioning human beings, just like you and me! 
After the experience, when the participants were ungarbed, they said that what they did was their way of “coping” with the situation of being assigned a task to do and being “confused” or not knowing what to do to accomplish the task. They described their feelings on being in this state using words like angry, sad, frustrated, defeated, and even lonely. It dawned on me that these people were doing the best they knew how to do, whether their “coping” mechanisms worked or not, and whether their “coping” mechanisms were appropriate to getting their tasks done or not. They really were doing everything they knew how to do to solve their problem.
Of course, the parallels to real persons with dementia were instantly obvious. Those persons are “coping”, successfully or unsuccessfully with the disease, not using inappropriate behaviors. We, the “unimpaired” people must understand this to help them get through their day, so that anger and tears can turn to smiles and laughter.  Once we understand this, we can turn our frustration and anger into compassion and encouragement for those with the diseases. 

  
You just never know, until you’ve walked a mile in another man’s shoes. Once you have done that -- then you have the information to make your own changes.

Contact Carole

Re-Kindling Relationships with a Senior With Alzheimer's

By Carole B. Larkin 

May 10, 2012 08:59AM

Question: When a senior suffering from Alzheimer’s does not recall a person, is it recommended to introduce yourself, even if the result might be upsetting the patient? (i.e.: “I am your wife.” Or “I am your son/daughter.”)

Carole:
I think that it all depends on the individual with the dementia. Some people would not be upset learning for the first time (to them) that they had a son or daughter or husband or wife or aunt or uncle, and so on. Others will get very upset being told that they have any of the above because they may think that they are a different age than they really are (usually younger) and they couldn’t be married or have any children because the are too young (if they thought that they were twelve for instance).  Or perhaps they know that they know you, but they are just not sure of how they know you, or if you have a relationship to them. You could start by simply stating your name, as in; “Hi, I’m Emily and I’m a person who (likes) loves you very much.” That way, you skirt around the relationship issue while making them feel good, because someone feels warmly toward them.  It’s about respect for the individual, and not pointing out their deficiencies. It’s not like they can do something to fix their memory loss, so why point it out to them? All it can do is hurt their feelings.

Contact Carole

Problem - Wearing the Same Clothes Day after Day

By Carole B. Larkin 
April 16, 2012

A reader is looking for solutions to a problem.

Dear Carole,

I live in Vermont and am the oldest child of my 88 year old mother with Alzheimer’s and an 87 year old father who is her primary caregiver. They live independently near my brother who is very available and helpful but not always that insightful.

I try to visit them every 3-4 months to check in and make sure they are doing OK and deal with all the little issues that seem to pile up. 

They are refusing outside assistance although I continue to recommend getting even minimal services in the home (housekeeping, etc) and hiring a GCM is out of the question. They are very private people who are determined to take care of themselves.

I plan to visit in May and the biggest issue for my dad right now is getting my mom to buy new clothes. My mother was always immaculate and somewhat of a clothes horse but now she refuses to buy anything new. Her clothes are stained, worn and not the most appropriate at this stage of her life.

During my last visit I took her out and had a personal shopper do most of the leg work but when it came time to try the new outfits on, mom balked and said she really liked what she already had and didn't see the point of getting new. "Whom do I need to impress?" "I hate to disappoint you, sweetie, but I'm just fine so can we go home now.”

At this point I'd be grateful to do some online shopping for basic (well constructed) clothing that is easy to wear (elastic waistbands on well tailored slacks) and easy to maintain.

Any thoughts on how to get some of this accomplished before I fly to Texas next month?

I'd prefer just spending time visiting and "being with" my mother and not stressing her out with putting demands on her.

Thank you for your time and consideration of my request. By the way, I'm very impressed with your sensitive and informative posts on the Alzheimer's Reading Room.

Regards,
Susie

Note: Real names and locations have been removed in the above for privacy purposes.

Carole's response.

Dear Susie,

Thank you for your kind recognition of my input on the Alzheimer’s Reading Room. It really makes my day to know that what I write gets read, and can help people. My mom had it, and I do this to honor her legacy as well, so she’s smiling too. Thanks for that.

Now on to your question. It’s probably too difficult for your mom to make choices from a number of clothing options anymore. That’s why she wears the same things over and over. It’s not stressful to her. Also, chances are that by this time in the disease, that she literally can’t see the stains, etc. Plus, I’m guessing your dad is not the world’s best laundress. So, these are my thoughts:

Find out from your dad the outfit or two outfits that your mother puts on the most. The color, the style, the size, the manufacturer. Have him take a picture of them if he can and send it to you.

·                     Buy five identical outfits as closely matching the current outfits as you can.

·                     Bring them with you but don’t show them to her.

·                     When she is at the hairdresser or elsewhere out of the house, replace the old, dirty clothes with the new ones in her closet.

·                     Take the old ones out of the house. Donate them or throw them in a dumpster somewhere if they are that bad.

·                     Say nothing -- see if mom notices.

·                     If and when she does, immediately apologize to her saying that you spilled something (insert what makes sense to you) on her clothes and accidently ruined them. You are so, so, sorry -- with the look of pain and guilt on your face. You found some clothes almost like them in the back of her closet or in another closet (whatever makes more sense), and thought she could use them until you buy her new clothes. Please forgive me mom, I feel so bad!

·                     That should take care of it. If not, contact me and we can try something else.


Every night thereafter, dad sneaks in after she is asleep, and takes the days clothing and puts it in a (laundry) bag somewhere in the house where mom doesn’t go or won’t see it.


 Do one of two things: Have a dry cleaner in the area come pick it up say twice a week, clean it, with some of your fathers clothes if necessary, and drop it off (in boxes if necessary) to somewhere in the house she doesn’t go. Make these arrangements with the cleaning company. Most will do this, for an extra charge. Or make a “gift” of a housekeeper to come over for a few hours twice a week to do the laundry, light cleaning, etc. It’s your gift to them -- you are paying the person. You want to do this for them, You can’t help in any other way.

Dad, please accept the gift for my (your) sake! 

It will make me feel better, like I’m contributing. Really work him over! And I’ve already found just the perfect person! Make it like it’s a done deal. 

If it were me, instead of hiring just a cleaning lady, I’d go to one of the home care agencies and hire a CNA (certified nurse’s aide). She can and will do cleaning and laundry, but can also check to see if mom and dad are taking their medicine correctly, take their blood pressure and temp if they look sick, etc.

When you contact the home care agency just tell them that your parents are resisting, but would easier accept someone who would be called their cleaning lady, at least in the beginning. 

The company will understand completely -- trust me on this one. The company will come over to do an assessment, just tell your parents it’s part of the cleaning service, to make sure that they will get a person they will like! 

You’ll need for the person to come say for four hours a day, two days a week (at least to start). Four hours is the normal minimum hours a day those companies need to be able to send someone. Perhaps she can make lunch for them too!

Let me know how that works out.

Warm regards,

Carole Larkin

Contact Carole

Things I learned from the Virtual Dementia Tour Certification Training

 

You just never know, until you’ve walked a mile in another persons shoes. Once you have done that -- then you have the information to make your own changes.


 By Carole Larkin 
February 22, 2012

I am now a CERTIFIED TRAINER of P.K. Beville’s thought changing, life changing Virtual Dementia Tour experience. 

This is the most revolutionary teaching tool I have ever seen for caregiving for a person with Alzheimer’s or other dementia. 

 Once I went through the tour a few times and had conducted the wrap up/teaching session at the end of it another few times, I knew that I had to carry this tool to all caregivers I could reach. So, I contacted P.K. and asked if I could join her next class.  

I went to Atlanta and participated in her intensive trainings for facilitators and certified trainers. Now I can train not only family caregivers and professional caregivers from home health and home care companies, all forms of senior residences such as assisted livings, memory care communities and nursing homes, but also many other professionals such as emergency medical technicians, firemen, policemen, doctors, nurses, social workers, and the like. 

 Even better, now I can train them to be trainers themselves, so this knowledge can spread even further. I feel fortunate to be able to be a part of this magic.

One of the biggest insights I gained from the training is that people with dementia (especially in middle stages) are not engaged in illogical “inappropriate behaviors” when they do things like wander or pace aimlessly, shadow their caregivers to distraction, mutter to themselves, ask the same question endlessly, or any one of a number of other actions that drive their caregivers to distraction. What they are doing is engaging in “coping” mechanisms to deal with their lack of knowledge or direction in the best way they can at that moment.

The Virtual Dementia Tour participants are garbed in a way that gives them the experience of having dementia. Once garbed, they are asked to do several simple tasks. Few are able to accomplish even half the tasks requested of them in the time allotted (plenty of time under ordinary circumstances). By design, their senses are altered; their brain is set to a confused state. They are not able to process or make sense of information given to them to accomplish the tasks they are given to do. Then they are led to the area in which the tasks are to be completed.

What happens then? 

 Perfectly healthy people who five minutes before behaved “appropriately” start doing what we call “inappropriate behaviors”, automatically, all on their own! 

 They may wander around aimlessly, knowing that they are supposed to be doing something, but because they couldn’t hear or couldn’t remember what tasks they were told to do, they wandered around looking for something to do, anything to do, whether it was the task assigned to them or not. 

 Others may stand frozen in the room, not knowing what to do and afraid to do anything because it might be the “wrong” thing to do. Others may see someone else in the room and start following them around to do whatever the other person is doing, figuring that the other person knows what they are doing, so it must be the best way to get things done themselves. 

 Remember, just five minutes ago these were fully functioning human beings, just like you and me!

After the experience, when the participants were de-garbed, they said that what they did was their way of “coping” with the situation of being assigned a task to do and being “confused” or not knowing what to do to accomplish the task. 

 They described their feelings on being in this state using words like angry, sad, frustrated, defeated, and even lonely. It dawned on me that these people were doing the best they knew how to do, whether their “coping” mechanisms worked or not, and whether their “coping” mechanisms were appropriate to getting their tasks done or not. They really were doing everything they knew how to do to solve their problem.

 The parallels to real persons with dementia were instantly obvious. Those persons are “coping”, successfully or unsuccessfully with the disease, not using inappropriate behaviors. We, the “unimpaired” people must understand this to help them get through their day, so that anger and tears can turn to smiles and laughter.  Once we understand this, we can turn our frustration and anger into compassion and encouragement for those with the diseases.

You just never know, until you’ve walked a mile in another man’s shoes. Once you have done that -- then you have the information to make your own changes.

Contact Carole

Does My Mother Know She Has Alzheimer's?

By Carole Larkin 

Feb 16, 2012

Question: My aged mother has been diagnosed with Alzheimer’s and she has been undergoing treatment but I don’t think she realizes that she is ill. Could she have lost the ability to understand that she has Alzheimer’s?


Answer:

Some people never understand that they have Alzheimer’s or another dementia. It’s called Anosognosia (a lack of ability to know that they have a disability). The portion of the brain that controls our awareness about ourselves is damaged by dying neurons. Biologically they can’t know that they have a cognitive illness. That’s different from denial. Denial is a purposeful thought process that rejects something they inherently know to be true.

Some people do know and are aware that something is wrong with their thinking processes. They may not know exactly what it is, but they know that something is not right, that they are different from other people. Some people will say “I have Alzheimer’s” some will say “I have memory problems” or any one of a number of similar things. It really depends on the individual.

If someone understands that their thinking is impaired, it happens fairly early in the diseases. Sometimes the knowledge stays with them months or years, sometimes not. It depends upon how fast the disease proceeds and which portions of the brain become impaired.

Contact Carole

Alzheimer’s and Employment

I am encouraged by seeing more and more excellent articles on various aspects of living with Alzheimer’s or related dementias. One of these articles that caught my eye is in the December/January issue of Neurology Now, the American Academy of Neurology’s Magazine for Patients and Caregivers. The magazine is FREE to individuals with a neurologic disorder and their caregivers. Order yours by calling 1-800-422-2681 or just go to: www.NeurologyNow.com and sign up. The article was called “Dementia in the Workplace” and was written by Gina Shaw. It had a number of issues and possible answers in it about being on the job with Alzheimer’s (or Mild Cognitive Impairment, MCI). I’d like to bring some of them up for discussion.

1.      The impact of Early Onset and Early Diagnosis:

This question is relevant because of the number of “boomers” at the age of Early Onset. Additionally, many see the need to work longer, due to the loss of assets set aside for retirement during the last several years. Many are planning to work into the years defined as “Late Onset”. If they are diagnosed early in the disease (say during MCI, often a precursor to Alzheimer’s disease), before symptoms mandate they leave their jobs, then they and their families will have the ability to determine when they will leave the workforce. They may be able to negotiate with their employer a change of positions, to one that they could more easily handle using aids such as day planners and checklists or by handing over more responsibility to co-workers and subordinates. This seems to be a far superior option, rather than being “let go” or “fired” due to job performance problems or having to deal with a crisis caused by an action or non-action due to the advancing cognitive disease. Pat Summitt, (the coach of the famous Lady Tennessee Volunteers basketball team, and a person diagnosed with early onset Alzheimer’s disease), has used strategies such as handing over responsibilities and tasks to assistant coaches and keeping to a strict daily schedule using day planners and check lists to remain in her position as head coach.  

 

2.      Deciding to relinquish the job:

What factors should be considered when making the decision to give up the job? The author says safety is the first consideration! If other people’s lives literally depend upon that person being cognitively at “full speed”, that should be the first priority of the person with the cognitive issue and his family. Some of the examples she gives are: “a surgeon, a nurse, an airline pilot, or a school bus driver”. Secondly, consider if the job holds great responsibility or involves large sums of money (either the company’s or individual’s), whether financial ruin could occur due to action or non-action due to the advancing cognitive disease.  Third, consider the stress on the individual and the burden on his coworkers to pick up his “load” of work. If a job is a repetitive job, such as stocking shelves or being on a manufacturing line, the person may be able to stay on the job longer than a person who has to learn and process new information all the time, such as an Information Technology worker or a stockbroker.

 

3.      After leaving the job:

Social Security recently ruled that Early Onset Alzheimer’s disease qualifies for its “Compassionate Allowance” list of diseases. Diseases on that list get fast-tracked through the approval process for Social Security Disability benefits. Money isn’t everything in life after being employed. Each and every one of us needs a reason to get out of bed every morning, meaning a sense of purpose and meaning to our day. People who have Alzheimer’s are no different. It is VERY IMPORTANT to plan in advance, if you can, to have something that is either meaningful to your loved one, or helpful to others for them to do, after leaving employment. Things like yard work or gardening if that gives your loved one pleasure (a planter box inside if it’s winter!), knitting clubs, or painting classes, if that’s their interest.

Volunteering is excellent, perhaps at church assisting church personnel or at a hospital delivering flowers to patients, or assisting a little league team with their equipment. The possibilities are endless, and all non-profits need volunteers all the time. Without meaningful engagement, isolation and depression can appear quickly. Your job as caregiver of a person with Alzheimer’s is tough enough as it is, without depression adding to the challenges.

 

Friends of mine, Lee and Pat Sneller, are great examples of doing it right. Lee was diagnosed in 2009 while participating in a clinical trial for Alzheimer’s (as a “normal” subject). Lee was an engineer, teacher and a businessman. After his diagnosis and the end of his employment, Lee is busy doing things he feels passionate about and also helps others. Pat and Lee give speeches about the fact that there is life after Alzheimer’s, have been very active in the local and national Alzheimer’s Association, working on committees, and generally being one of the “faces” of Alzheimer’s in a uplifting and positive way.

 Lee also volunteers for SCORE (Service Corps of Retired Executives), an agency of the Small Business Administration. As a business person, Lee always mentored people.   He continues that today by coaching people who have their own small business or those who want to start a business.  As a SCORE volunteer, he works as a counselor to provide guidance and advice. Lee (and his SCORE partner) meet with clients every week in the Flower Mound Chamber of Commerce offices.  He also helps to organize monthly meetings, sends out emails, collects RSVPs, and helps the chapter stay on top of things.  He does have some problems with this occasionally, sometimes forgetting to add something to a communication.  He has decided to ask someone to review the emails before he sends them out so that he can continue to fill this role.  He finds this responsibility very satisfying, since it speaks to his strengths in organization. I admire this couple for their attitude and their ability to create “Life after Alzheimer’s.”

Contact Carole

 

Give Your Loves Ones Success!

Q. My mom has early-stage Alzheimer’s. 

Some days she can do something easily, other days not so much. Are there ways in which I can help her live independently and productively?

 

A.  Absolutely! It is all about you controlling her environment so that the things that she attempts to do are successful. Quietly, and in the background you want to simplify tasks that she does so that she is able to accomplish things herself.

This way she is able to feel good about herself, and most importantly, feel that she still has independence. No one wants to be a burden to others; especially to their children!

For example, make bill paying a joint effort; that is, you and your mom do it together.

See how she is doing that day. If it’s a good day, all you do is watch her do it, or maybe just put the stamp on the envelope.

As time goes by maybe you write the name of who the check is going to and spell out the amount of money being paid. Mom can fill in the actual numbers of the dollar amount and sign her name.

Still later she can just sign her name. Later even than that. She can put the stamp on. That way she gets to feel like she has contributed and gets to own the activity.

Think about ways you can simplify things. What used to be a multi step task can now become a one step task. Salad now comes in a bag, rather than made from scratch. Premade meals or microwavable meals can be substituted for cooking from scratch. Laundry can be broken down into simpler steps with her doing the tasks and you watching and cueing her as needed. Cleaning tasks should be treated the same as laundry; tasks are broken down and simplified.
Things she enjoys doing should be simplified.

Arranging flowers is a task that is simple and can’t go wrong.

There is no right or wrong in painting.

You can think of other enjoyable things for her to do.

The important thing is that you do them with her. It’s a shared activity.

If she’s a social person, she should be with others of her own age. Taking her or arranging transportation to a senior center, and a day care facility (later) is a good thing. She will operate on her own there (under supervision) and that is enabling for her.

So to sum up, if you make the environment safe for her, then she should attempt everything she can attempt as long as it’s simplified or broken down into smaller tasks.

If she gets frustrated, just move on to a different task. It’s all about having her feel good, confident and successful in the moment.

It’s sort of a move it or lose it thing.

 

Contact Carole

If You Are Unhappy with the Doctor's Communication with your Loved One with Dementia . . .

October 16, 2011

Doctor, please start out by addressing the Alzheimer’s patient first.

 

Addressing a person living with dementia directly shows respect.

If they are not able to answer the question, then turn to the caregiver who is with them.

Try to ask the Alzheimer’s patient first when you are asking simple yes/no questions. 

Here are some additional tips which may make the visit easier on all concerned:

1. Make eye contact. Always approach them face-to-face and make eye contact. Use their name if you need to. It is vital that they actually see you and that their attention is focused on you. Read their eyes. Always approach from the front since approaching and speaking from the side or from behind can startle them. 

2. Be at their level. Move your head to be at the same level as their head. Bend your knees or sit down to reach their level. Do not stand or hover over them – it is intimidating and scary. They can’t focus on you and what you are saying if they are focused on their fear. 

3. Tell them what you are going to do before you do it. Particularly when you are going to touch them. They need to know what is coming first so that they don’t think that you are grabbing them. 

4. Speak calmly. Always speak in a calm manner with an upbeat tone of voice. If you sound rushed or agitated, they will often mirror that feeling back to you and then some.

5. Speak slowly. Speak at one half of your normal speed when talking to them. Take a breath between each sentence. They cannot process words as fast as non-diseased people can. Give them a chance to catch up to your words.

6. Speak in short sentences. Speak in short direct sentences with only one idea to a sentence. Usually they can only focus on only one idea at a time.

7. Only ask one question at a time. Be patient. Give them time to answer it before you ask another question. They will try to answer both questions, fail and get frustrated.

8. Don’t say “remember”. Many times they will not be able to do so, and you are just pointing out to them their shortcomings. That is insulting, and can cause anger and/or embarrassment.

9. Be positive. For example say “We need to take some blood to check your level of ___. It will only take a minute and then you’ll be done here.” Be inclusive and don’t talk down to them as if they were a child. Respect the fact that they are an adult, and treat them as such.

10. Do not argue with them. Especially if they are not being compliant with your protocols. It gets you nowhere. Instead, validate their feelings, by saying” I see that you are angry (sad, upset, etc…). I will go see another patient but will return in a few minutes, then we can continue on. Leave the room and let them collect themselves. They may comply when you make the suggestion a second time, when they are calmer.

 

Contact Carole

Types of Dementia Care Communities, the Semantics of Confusion

September 22, 2011

Semantics aside. Identifying a good memory care facility for a loved one is very difficult.

I’ve seen videos on Lakeview Ranch (by the way, a center of excellence if there ever was one!) and thought to myself, “no it’s not a group home, it’s a memory care assisted living”, at least that’s how I’d refer to it.

Then I began thinking about definitions of types of care communities that house persons with dementia. I did some research and found much to my surprise and consternation, that there is no agreed upon definition of the types of homes that have people with dementia living in them.

What is termed a memory care residential care home in one state could be called a memory care room and board in another or a memory care assisted living community in still another state. How confusing!

The laws regulating these communities vary considerably from state to state, and I’m sure from country to country. I can talk about Texas, because that’s where I practice. Scanning Minnesota’s laws for similarity to the laws I am familiar with was futile. I would be interested in hearing from people in other states and countries on what they call their communities and the types of laws governing them (or not!).

In Texas there are communities known as residential care homes or sometimes referred to as small assisted livings. They are literally houses where unrelated adults live and are cared for by caregivers 24 hours a day. Each person has a bedroom, or sometimes shares a bedroom with another person.

Their medication taking is monitored by the caregiver. Their meals are served there, usually around a large dining room table. Sometimes each room has its own bath, sometimes two or more rooms share a bathroom.

Some activities are planned for the residents each day. Sometimes the activities happen; sometimes they don’t, depending on the workload of the caregivers. They are usually quieter types of places and seem to work well for people who become agitated with too much visual and auditory stimulation. The TV seems to always be on.

The size of these homes can range from three bedrooms to a specially built high end home with say, a dozen bedrooms. In Texas, any home that houses more than 3 residents must be licensed, inspected yearly and regulated by the State of Texas. The state concentrates its efforts on monitoring the safety of the home and in the general care of the residents. Any home containing three or less residents does not have to be licensed in Texas.

If my clients prefer or are better suited to a residential care home type of community I always show them licensed homes only.

As far as I’m concerned, if the owner/operator of the home is not willing to be inspected to make sure they meet minimum (and I do mean MINIMUM!) safety and care standards, I’m not interested in having my clients live there

I also prefer for RN’s (Registered Nurses) to own or manage them. The nurse has a higher stake in the residents’ health when she owns/manages the residence. I will refer to homes without nurse owner/managers if there is a regular visiting physician or nurse practitioner contracted with the home

These homes may or may not have a keypaded entry and exit door. Usually if there is no keypad there is a wanderguard system to let the care giver know that someone has eloped.

There are two different categories of these homes/assisted living in Texas.

Type “A” homes which service a lower level of care for the residence. Residents in a type “A” home must be able to evacuate the home on their own, meaning with no assistance from any one.

“B” homes can provide more care and are appropriate for frailer, sicker people with dementia. They must be able to exit the home in a certain number of minutes, but can have someone assisting them (think wheelchair).

Type “B” homes can take hospice patients as long as there is a hospice company that takes medical responsibility for the patient. These are the type of places that people take their loved one if to die if they can’t take them back to their loved one’s home (They come from out of state) or they don’t want them to die in a hospital and there is no inpatient hospice facility in the area.

Semantics aside. Identifying a good memory care facility for a loved one is very difficult. Most families have little or no experience in making a decision of this type. As result, they don't know what to ask or how to do the appropriate due diligence.

It doesn't stop there. Even if you find a "high quality" facility, changes in key personal, or cut backs due to profit motive can change the quality over night.

Next time, I’ll discuss how I assess memory care facilities and personal. I'll include the kinds of questions you should ask, and information you need to make an informed decision. I'll also talk about how you go about selecting the right type of facility.

You would be surprised to learn that a facility might accept a patient, and then decide they don't want them. This leads to the need to find a new place literally over night.

I know what it feels like, and how frustrating it can be. when you have to change facilities due to changes in personal, or because of a need for a new and different type of care.

I know because I had to "move" my own mother -- more than once.

Contact Carole

 

How Does Dementia Get Diagnosed?

A “fully baked” diagnosis has 3 parts.

By Carole B. Larkin

WEDNESDAY, JUNE 15, 2011

One of the most common questions I get asked has to do with diagnosis of dementia.

How does dementia get diagnosed?

My answer is:

Dementia isn’t a disease at all, in spite of how it is used in everyday language.

Dementia is actually a description of symptoms of over 70 diseases.

Symptoms such as confusion, memory loss, and changes in the personality of a

person indicate that someone may have one of the diseases.

Different diseases may show different symptoms in varying strengths and at varying times. For example,

Alzheimer’s disease, by far the most common of these diseases, estimated at upwards of 65% of all

dementias, usually shows short-term memory loss as its first and primary symptom.

Lewy Body disease, a lesser known but still significant dementia, shows balance problems and

hallucinations earlier in its disease than does Alzheimer’s disease.

Vascular dementia, which comes from strokes and mini-strokes, shows varying symptoms depending on

where in the brain the stroke occurred. Sometimes there is memory loss, sometimes not.

Frontal Temporal dementia usually presents as changes in personality and lack of inhibition rather than

memory issues early in the disease.

Those are what I call “the big 4” diseases of dementia. There are plenty of others, minor players, in terms

of numbers of people who have a dementia.

Some diseases of dementia are “treatable”. Dementias that come from things like B-12 deficiency, thyroid

imbalances, and NPH (Normal Pressure Hydrocephalus) can be treated.

The “big 4” are progressive and eventually terminal. There is no medicine at this time to “cure” them but

researchers worldwide are working hard to find an effective treatment or cure.

If a loved one shows one or more signs of dementia, they need to get what I call a “fully baked” diagnosis.

The 3 parts of a “fully baked” diagnosis are:

1. Verbal and written tests and a complete history of medical and cognitive symptoms told to the doctor by

the caregiver/family member.

2. An MRI and/or PET scan of the brain which may show if strokes or mini strokes have taken place.

3. Special blood tests to rule out other reasons for a dementia such as thyroid imbalance, B-12 deficiency,

etc.

A “half baked” diagnosis is a 10-15 minute verbal or written test, then the doctor saying, “Here is a

prescription for Aricept (or Exelon, or Namenda). Take this. I can’t do anything else for you.”

Don’t accept this treatment. Your loved one deserves more. Ask for all 3 parts of the diagnosis.

What if your loved one has a treatable dementia?

Contact Carole