Transitioning Into the Role of Caregiver
January 28, 2002 1pm EST

This chat has been produced by ElderCare Online and the Alzheimer Research Forum. Alzheimer's Answers is an educational forum where caregivers can connect with professionals and clinicians to understand Alzheimer's Disease. This Chat Room provides general information that is for educational purposes only and should not be considered as offering medical advice. The information that is made available by this Chat Room should not be used for diagnosing or treating a medical or other health condition. Viewers and participants should always consult a physician or other qualified healthcare provider for the diagnosis or treatment of any medical or health condition. ElderCare Online, the Alzheimer Research Forum and Dr. Zamrini MAKE NO WARRANTIES, EXPRESS OR IMPLIED, AS TO THE VALUE, USEFULNESS, COMPLETENESS OR ACCURACY OF ANY OF THE INFORMATION THAT IS MADE AVAILABLE BY THIS CHAT ROOM.

Dr. Edward Zamrini is an assistant professor in the Department of Neurology at the University of Alabama at Birmingham. He is head of the Information Transfer Core in the UAB Alzheimer's Disease Research Center, one of the leading institutions of its kind. His primary clinical interest is early detection of Alzheimer's Disease and its treatment, although he has a great interest in the way that knowledge is shared by professionals with families. Before joining UAB, Dr. Zamrini served as associate professor of neurology and psychiatry at the Medical College of Georgia, as well as acting chief of the dementia/Alzheimer's program and director of the geriatric neuropsychiatry program at the Veterans Affairs Medical Center in Augusta. You can read more about Dr. Zamrini and the University of Alabama at Birmingham at http://www.health.uab.edu/show.asp?durki=29851&site=46&return=9885? and http://main.uab.edu/show.asp?durki=11627.

For additional chat transcripts, visit the Alzheimer's Answers Home Page.

Dr. Zamrini
Hello Mr. OBoyle, I'm trying to get myself oriented to the chat page.

RichOBoyle
I really appreciate the time and effort you are taking for this.

Dr. Zamrini
My pleasure.

JeffDavis (This user has entered ElderCare Chatroom)

RichOBoyle
Hello Jeff and welcome

RichOBoyle
We are just getting settled in

RichOBoyle
Waiting for a few more attendees before we get started.

nico (This user has entered ElderCare Chatroom)

RichOBoyle
Hello Nico and welcome

Dr. Zamrini
Hello Nico

nico
Hello Dr. Zamrini!

JeffDavis
I'm a counselor just starting a new job in senior services at Mental Health Center of Greater Manchester in New Hampshire.

RichOBoyle
Do you work primarily with people with AD?

JeffDavis
Caseload will certainly include clients with dementias of all sorts, but is not pre-sorted

nico
Rich had quite a few questions so expect people to show up....

RichOBoyle
Jeff if you have a question to get us started, why don't you share it...

June (This user has entered ElderCare Chatroom)

JeffDavis
Current caseload is 4 clients (but will grow rapidly i'm assured) one is early stage Alz and one vascular dementia. One Dysthymia, and one is Bipolar II

RichOBoyle
Hello June and welcome

June
Hello, sorry to be late.

RichOBoyle
We are just getting started, so please get comfortable

RichOBoyle
One member wrote in advance: Her mother has been diagnosed with early stage AD, but has not been told of her diagnosis. She has no friends or family, so she has limited socialization. How can her daughter convince her to attend a local day care center?

therevera (This user has entered ElderCare Chatroom)

RichOBoyle
Hello theravera and welcome

RichOBoyle
We are just getting started.

RichOBoyle
You are next in line if you want to prepare/type in your question

darlene (This user has entered ElderCare Chatroom)

RichOBoyle
Hello Darlene and welcome

therevera
I don't have a question but wanted to observe if I may?

RichOBoyle
Of course

Dr. Zamrini
I usually try to enlist the patient in that decision (with the help of some leading questions and by limiting options provided to her.) For instance, I may ask her if she feels lonely sometimes, or if she would like to accompany me to a social event, etc. while there may be reluctance at first, often patients are ultimately agreeable to trying a new place. I would also encourage you to be there with her the first few times to help her feel more comfortable.

June
By the way, what do you think about the issue of whether to tell someone that he or she has Alzheimer's. As this first questioner says, her mother may suspect that's what she has. So by not telling her, might that not feed feelings of paranoia?

RichOBoyle
What is the value of socialization for an individua with AD, or for any elderly person in general?

darlene
I am new at this and at being a caretaker. How do you tell you friends about the condition of your spouse?

SR (This user has entered ElderCare Chatroom)

RichOBoyle
Hello SR and welcome... we just got started, so please get comfortable

Dr. Zamrini
I find that most patients have some awareness that something wrong is going on, and I have had a number of patients tell me they think they have Alzheimer's disease or ask me flat out if that is what I think. I believe in being honest and sensitive. If the patient asks for a diagnosis name, I provide it. If on the other hand I tell them that they have memory loss, that it is not normal but due to a disease, and that we should treat it, and they ask no further I leave it at that.

RichOBoyle
Darlene, were you getting more speficially at how to tell friends about your husband's diagnosis? Does HE know of the actual diagnosis?

Dr. Zamrini
Re socialization: I believe socialization is helpful. It stimulates brain activity and is associated with less depression.

Dr. Zamrini
re telling friends: This depends on the friends and your relationship to them.

darlene
Yes, he is very aware of his diagnosis but is very uncomfortable in social situations. He is afraid he will say the wrong things or forget the right words.

RichOBoyle
Could you try it out on some close friends first?

RichOBoyle
Perhaps it will ease your husband's concerns if others knew... then they would understand why he may not have the social finesse he used to.

Dr. Zamrini
I find it easier to discuss memory loss in general and the prevalence of AD and the hope for new medication and the fact it is not contagious with close friends and relatives that one trusts. With others I would just be very matter of fact about it.

RichOBoyle
Do any of the caregivers here have their own experiences or input on this matter?

June
Would it also help Darlene's husband if he could find helpful coping strategies in social situations, to help defuse any embarassment and help him feel less anxious?

darlene
We have told a few friends, but he is still uneasy even when I reasure him that he is doing quite well socially. He does better when people do not know.

Dr. Zamrini
Darlene, your husband appears to be relatively high functioning. When going out with friends who know his diagnosis, try to focus more on being social and enjoying the company and less about being perfect. If they have a good sense of humor it helps not to focus too much on any "slip-ups" and just treat them as very normal.

darlene
Thank you. I thank this will be a help to him and myself.

RichOBoyle
One of our members wrote in advance that she is concerned with preventing "catastrophic behaviors." Can you explain what types of negative behaviors may arise, and how to prevent them in the first place?

Dr. Zamrini
The trouble with trying to teach Darlene's husband coping strategies is that it is much easier for others to adapt to his needs than for him to adapt to their desires.

darlene
I think you have to know the people you are dealing with and how much they know about AD.

Dr. Zamrini
Catastrophic behaviors can take on many forms. This reminds me of a "Cathy" cartoon strip I once read. Cathy came home with a load of Christmas gifts, but looking at her list realized she had much more to do and so got very upset.

JeffDavis
The "normal" relationship between your husband and his friends will be changing, his friends may need some support in understanding the changes that are happening and learning ways to deal with the shifting relationship.

Dr. Zamrini
Catastrophic reactions are usually a sign that the patient is overloaded (for them). I would start by remaining calm and listening and validating their concern. I would also try to limit their decision-making needs. I would give them a lot of reassurance. I would try to avoid the situations that lead to catastrophic reactions.

RichOBoyle
One member writes that her mother has disrupted sleep patterns. She sleeps about 18 hours a day and would sleep longer if allowed. She has been diagnosed with mild dementia and bipolar disorder. Are the prescription and non-prescription approaches to improving her sleep hygiene

darlene
How do you deal with the agitation that sometimes comes with Ad? My husband gets very frustrated and then becomes agitated or angry at something I have said.

Dr. Zamrini
Patients with AD and related disorders may have sleep changes. An increase to 18hrs due to the disease would be unusual. Please check the medications she is on and if any of them can cause excessive drowsiness.

JeffDavis
This sleep pattern may also be attributable to depression. She should have a visiti with her psychiatrist to assess efficacy of any anti-depressant and euthymic medications

June
While we're on the topic of sleep, several caregivers have asked us at the Alzforum about sleep apnea among AD patients. Is that common? Is it related to the AD, or not?

Dr. Zamrini
Agitation in the AD patient can be very frustrating. Try to avoid the situations that result in agitation. Remain calm. Try to find out if he is in pain or discomfort. Reassure him. Avoid arguing. If the agitation is frequent consider an discussing antidepressant use with his physician.

Dr. Zamrini
Thank you Jeff.

SR
Our elder law attorney told us that sometimes people with AD have killed or injured others. He gave an example of a woman who tried to cut off her husband's arm with a knife. Are these kinds of reactions common, and are they predictable so that one can head them off before something terrible happens? (I'm new at caregiving -- my husband was diagnosed with AD only last July.)

Dr. Zamrini
I am not aware that sleep apnea is any more common in AD that in people who do not have AD. It is a common condition and in some instances may result in some memory loss. Some medications can disrupt sleep and result in sleep disorders.

RichOBoyle
One member asks: Does the Alzheimer's patient realize the changes they are going through? When they lose their temper, do they realize that they are screaming, cursing, etc.?

Dr. Zamrini
There are occasional stories of violent acts by AD patients. Fortunately, these are not very common. They are not predictable. However, if the person has a history of violent behavior, that should be addressed.

Dr. Zamrini
some patients realize that some change is going on. Often, they deny the change or minimize it. Generally, those who lose their temper are in a stage where they are less aware of that.

Dr. Zamrini
Loss of temper, screaming, cursing etc. sometimes respond to calming and redirecting. Their frequency may decrease when they are placed on Cholinesterase inhibitors or antidepressants.

emjay (This user has entered ElderCare Chatroom)

RichOBoyle
An an individual's personality traits change drastically with the onset of AD? For example on member wrtites that her mother has become increasinglky suspicious and dwells on painful past events. Can this be alleviated?

RichOBoyle
Hello emjay and welcome

emjay
Hello & thank you.

Lynne (This user has entered ElderCare Chatroom)

RichOBoyle
Hello Lynne and welcome

Dr. Zamrini
Personality change is one of the features of AD (and more so in frontotemporal dementia). Degree and severity of change depend more on the area of the brain that is involved than on past personality.

Lynne
hi everyone

darlene
It is hard to deal with the changing relationship that accurs with AD. I sometimes feel resentful that dicisions are up to me now. How do I deal with these feelings?

Dr. Zamrini
Suspiciousness and dwelling on past events may be eased by "going with the flow". E.g. if the patient complains of losing their wallet, telling them 'let's go look for it'. When suspicousness is of delusional intensity (does not respond to validation or redirecting or evidence to the contrary) low doses of antipsychotics may help. I prefer to try antidepressants which may or may not work, first.

JeffDavis
Darlene, more than ever, you will need to use and develop support systems for yourself. Mutual support groups, and, if needed, group and individual counseling should be available in your community.

Lynne
Find a caregivers group in your area

kworstell (This user has entered ElderCare Chatroom)

SR
Thank you to all -- this has been helpful.

RichOBoyle
Hello kworstell and welcome

kworstell
Thankyou. Glad I could make it.

Dr. Zamrini
Darlene, neither you nor your husband have chosen his AD. Your best bet is to recognize that the disease is there. Your husband cannot stop the relationship from changing. It seems he has made many of the decisions. Now it is your turn. this is your new role. Consider it as a act of love (towards him). A gesture of gratitude ofr all the decisions he made that you have appreciated.

emjay
One change in my mother that I've had trouble dealing with is her increasing "neediness". She was always a strong independent person and a caregiver herself. Now the more she tries to cling to me, the more the urge I have to withdraw from her. Any suggestions?

Dr. Zamrini
I also agree with Jeff's recommendations.

darlene
Thank you for your suggestions and help.

Lynne
I have had AD for 4 years now.I lose things too.My husband&I laugh alot about the goofy things i do.We are in this together 100%.Which is as i should be

Lynne
We go with the flow

Lynne
We talk to everyone we can about AD.

darlene
It takes a while to get there, but it is getting easier.

RichOBoyle
Lynne... can you share some more insights on your condition... many of our members are caring for someone with AD... your perspective is so helpful... what are the top 3 things a caregiver should know?

JeffDavis
Emjay, as the roles reverse, you may have resentment for the lack of nurturing that your mother used to provide. Please be sure that you are getting your own needs for nurturance met.

Dr. Zamrini
emjay, see response to Darlene re her husband (above). Consider thinking of your actions to comfort your mother as a "thank you" for all she has done. attend support groups. If necessary, consider a sitter or some other pleasant socialization for her.

Lynne
Don't argue,while you are still steamed,they have turned the corner,going a different direction

Lynne
Have patience

Lynne
Take time out for you,95% of caregivers died before the LO does

Dr. Zamrini
Lynne, thank you very much for your insight and sage advice.

RichOBoyle
My final question from a member who could not be here: What are some tips and suggestions for helping an individual with AD when going to the doctor, especially the eye doctor or the dentist. Good eyesight, hearing and oral hygine are essential for quality of life. How can the doctor visit be improved?

JeffDavis
Thanks bunches, Lynne!

Lynne
We both go to caregivers meetings every week

June
Lynne, you make a strong case for laugher being powerful medicine. And the importance of acceptance of the experience you are going through. You sound like a wondeful couple!

Lynne
We are both nuts,not really,but it helps at times....LOL

Dr. Zamrini
Make sure the doctor knows the patient has AD and what the patient likes and dislikes that may be related to the visit. Chances are the doctor will try to adapt to the patient's situation.

RichOBoyle
Should the CG and patient do any advance preparation for themselves? time of day? distance from home?

Lynne
I am still able to see the Dr.alone,but if i feel the need i have my hubby go too

kworstell
Advance prep that we do - I write things out so I don't have to talk to the doctor as if Mom is not there. She is still aware of being "talked about" and it gets the appointment off to a bad start.

Dr. Zamrini
Yes, it is easier if the visit is in the morning rather than the afternoon. The patient should be told they are going for a check-up and reassured that the cg will be right there with them. Chances are the patient will be anxious about the visit. Reassurance helps.

Dr. Zamrini
In the office, I usually try to ask the patient questions first and when they cannot answer, ask their permission to ask their caregiver.

Lynne
Laughter is the best medicine in most cases

Dr. Zamrini
Thank you Rich for organizing this.

RichOBoyle
kworstell has just asked a quick question...

Dr. Zamrini
Thank you Lynne for your insight and advice.

RichOBoyle
Her mother sleeps 17hours a day. Is this normal?

Dr. Zamrini
Thank you Jeff for pitching in. I have to go to clinic now.

nico
Dr. Zamrini, million thanks from all of us!

RichOBoyle
This goes back to our earlier question. But I wonder if Dr. Zamrini can suggest a healthy timeframe for sleep... a target to shoot for

Dr. Zamrini
Rich, sleeping 17 hrs is not normal. Please check re depression and meds.

June
Dr. Zamrini, thank you very much from the Alzheimer Research Forum!

Lynne
Thank you,Dr.

Dr. Zamrini
I find up to 12 hrs acceptable if above factors have been explored.

RichOBoyle
Thank you Dr. Zamrini. The transcript of this session will be edited (to remove MY typos) and posted to the website later today.

June
Remove my typos too, Rich! : )

Dr. Zamrini
Thank you. Signing out.

therevera
I've enjoyed chat . thankyou all

Lynne
I was on Zoloft,had to stop it,i slept all the time while on it

Lynne
even on just 25mg

RichOBoyle
Kworstell... you may ask her doctor if any of her medications can be causing drowsiness. Some professionals suggest setting up a rigid sleep, exercise, toileting schedule.

emjay
thank you all

kworstell
Thanks - this was helpful.

RichOBoyle
thanks everyone and see you later.

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