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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.”
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.
Coping with a Senior's Dementia Delusions
October 21, 2011
Question: My aunt who is suffering from dementia is constantly accusing me of stealing her things. It is frustrating to try to convince her otherwise. How can I cope with this in a way that is also helpful to her?
Answer:
Chances are very high that she has simply misplaced the item(s) or moved
their location from the “normal” location. Because she doesn’t remember
moving the item, logically to her- she couldn’t have moved it, so
someone else must have taken it. The person who is caring for her is the
person in the house the most often and consequently is the first person
blamed. So, clearly YOU’RE IT!
The most effective response would be something like this. I’m sorry aunt
___ that your ___ (item missing) is missing. How about we look for it?
Sometimes a new pair of eyes can help. Then of course, you start looking
for the item. That act of looking becomes an activity in and of itself.
It gives you the opportunity to talk about Items you come across in your
search such as a memento of times past that she can tell you a story
about. You may be lucky and actually come up with the missing item, but
even if you are not that lucky, you have redirected her thoughts out of
the negative “I’m missing ___ and you stole it” to a more pleasant
thought related to the mementos you have found together.
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.
Identifying Suitable Activities for an Elder with Alzheimer's
September 22, 2011
Question: My husband who has Alzheimer’s, insists on going to bed all day. No matter what activities I provide he refuses. What should I do?
Is your husband sleeping
all day because he is up all night? If so, he is exhibiting what is
called day/ night transference. That behavior is not terribly unusual
for people who have a form of dementia. Simply, because time has no real
meaning to them, day and night get all jumbled up. To reverse this time
reversal without sleeping medications takes time and patience but can be
done. Essentially you will slowly be changing the person’s internal
circadian clock back to the same as everyone else’s. You do that by
keeping him up an hour longer during the day. For example, if he
normally goes to bed at 8:00 am, start by keeping him up until 9:00 am.
When that becomes part of his pattern, then keep him up until 10:00 am
and so forth. If you are really ambitious, try keeping him up two hours
more at a time. That way you get his clock changed faster. It sounds
exhausting I know; but aren’t you already exhausted from the way it is
now?
If it’s not day/night
transference then you’ll need to be a detective to figure out what
really is behind all this sleeping. Could it be the combination or side
effects of a medication or combination of medications he is currently
on? Many medications can cause drowsiness. Ask his doctor or your
pharmacist. Perhaps the medication can be switched to another that does
not cause drowsiness or lessens the effects of drowsiness. Maybe he
could get by on a lower dose. Maybe he could take it in a different
manner, like taking one half of it in the morning and one half of it at
night. Maybe he is depressed. It is not unusual for people with a
dementia to also have depression. If it is depression, there are
medicines that do work on that disease. Have you had his thyroid
checked? If he has a dysfunctioning thyroid, (hypothyroidism) many times
people become sluggish, tired and even weak. These are all things you
should discuss with his doctor.
Finally, maybe you are not
offering the right kind of activities that appeal to him, in particular.
To motivate him to participate he needs to feel that he was the one who
came up with the idea to do the activity. If he was a golfer, instead of
parking him in front of the TV to watch the golf channel, try saying to
him, would you help me with my swing or my putting stroke? Then take him
to a driving range or to a park or public course with a putting green
and let him “teach “you to drive or put. Perhaps his interest is in
classic cars, there are classic car shows occasionally. Maybe a friend
has a classic car. You could take him to visit it and tell you about it,
often. It may be new to him every time. At a minimum you could buy a
book about classic cars, or get one from a local library and go through
some pages of it with him. The object is for you to participate in these
activities with him, not leave him by himself to look at the book alone.
He’ll surely doze off without the stimulation of you being there and
talking about things with him. If his ability to speak is impaired, you
still need to be with him, so he can listen to you speak. Even listening
uses brain cells. My point is, be creative, in looking to appeal to his
current or past interests. He has lost the ability to be motivated to
find something he likes to do. You’ll need to put in front of him those
things and be with him while doing those things. Optimal would be if you
can do two activities in the morning and two activities during the
afternoon and perhaps one after supper;. More reasonable is one activity
in each part of the day. If that means your kids come over to do the
laundry for you, or your friends, close neighbors or church members cook
a meal for you both once or twice a week so you have the time available
to do things with him, then ask them. They really WANT to help. They
just don’t know how. Ask for specific tasks to be done so you can spend
time with him. You know, time with him is the only thing that you’ll
never be able to make up.
I like the following for
activity ideas:
The Best Friends Book(s) of
Alzheimer’s Activities by Bell, Troxel, Cox and Hamon
The Alzheimer’s Activities
Guide from Forest Pharmaceuticals (email or call the company)
The Alzheimer’s Activities
Book by B.J. FitzRay from the Alzheimer’s Store
http://alzstore.com/Alzheimers/alzheimers-activities-book.htm
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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.
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 aprescription 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?