Did you miss our May 16 online chat about caring for loved ones with Alzheimer's or other dementia-related diseases, hosted by Peter V. Rabins, M.D., coauthor of The 36-Hour Day: A Family Guide to Caring for Persons with Alzheimer Disease, Other Dementias, and Memory Loss? The transcript follows.
Comment from Guest: Is there a definitive, or rather, highly likely, set of behaviors that point toward Alzheimer's rather than simply aging?
Peter Rabins: Having difficulty doing something that you've always done easily, for example cooking a meal or filling out a checkbook, should raise concern that there is a significant problem. However, a specific diagnosis of Alzheimer's can only be made after a thorough evaluation.
Comment from Doug: My dad is 87 years old and was recently diagnosed with Stage 4 lung cancer and my mom is 82 years old. She has been experiencing difficulties with daily tasks such as paying bills, grocery shopping, household chores and we've noticed issues with her memory and would like to get her evaluated for Alzheimer's or dementia. The problem is she refuses to go to the doctor. It is becoming increasingly more difficult for her to care for my dad. She has resisted seeing a doctor or looking at assisted living facilities. What can we do to get the necessary care for my parents?
Peter Rabins: It sometimes helps to put it in the context of yourself. For example, "I would like to know if I'm worrying too much about you."
Comment from Alehandro: Banal questions: do exist drugs to heal dementia? Do Antipsychotic drugs help or not? Is it possible to heal from cognitive loss?
Peter Rabins: Right now, there is no cure for Alzheimer's.
Anti-psychotic drugs should only be used when other approaches have failed and the problems are very severe and upsetting.
People can dramatically recover from stroke; that demonstrates that the brain has a significant capacity to heal and recover.
Comment from Mary: My mother suffers from dementia; occasionally she gets a UTI (Urinary Tract Infection) which exacerbates her symptoms of forgetfulness and confusion. Is this common and should we ask for a lab test on a regular basis to see if that is the cause for periodic flare-ups in her behavior?
Peter Rabins: Yes, it is common for infections such as a urinary tract infection or a cold to cause worsening of symptoms. However, routine testing is not recommended because many infections do not cause a worsening of symptoms.
Comment from Linda: My husband desperately wants to relearn the simple things he has forgotten how to do. Can someone with Alzheimer's learn or is this a hopeless task of repetition?
Peter Rabins: It is easier for people to learn physical activities compared to facts. That is one reason why we encourage people to stay physically active as long as they are enjoying it.
Comment from Guest: Physician and professional staff development needs to be a priority on educating them about the caregiver burden.
Peter Rabins: I agree. Being a caregiver, whether as a professional or as a family member can be very challenging. It is important to remember that there are many learning resources that caregivers can use to improve how they care for someone with dementia.
It is also important to remember that caregiving can be emotionally taxing. It helps to have someone to talk to and it is very important for family caregivers to stay socially engaged with friends, family, church, etc.
Comment from Linda: My husband is 5 years into (from diagnosis) early Alzheimer's. Statistically speaking, he probably doesn't have many years left. He has never wanted to hear about the specifics of what is happening to him and so is unaware of the short amount of time he may have left. I haven't shared those statistics with him. Should I? Or is it kinder to let him slip, unaware of this, into whatever the next few years bring.
Peter Rabins: Many people with Alzheimer's disease live longer than nine years.
Unfortunately, the disease blocks many people's awareness of their impairment. If a person does not recognize how severe their symptoms are, it is not helpful to try to make them appreciate the depth of the problems.
Comment from Linda: Is there a point at which Aricept no longer helps and should be stopped?
Peter Rabins: A recent study demonstrates that some people can benefit from Aricept (and presumably Exelon and Razadine) in the third or severe stage of Alzheimer's. However, there are some people who do not have a benefit even at the beginning of the disease.
Comment from Christine: I don't even know where to begin in getting necessary care for my 72-year-old father who has had dementia for the past 4 years. Neurologist is saying now that it "may likely be becoming Alzheimer’s" and we need to develop a plan for serving "his best interests," which I understand to mean assisted care, psych services, etc. None of which Dad can understand and of course, reasoning with him is beyond us now. Where do I even start????
Peter Rabins: Think about what he would have wanted if he knew in advance that he would develop dementia.
If he has an advance directive, review it.
Many people with Alzheimer's disease can express some wishes even though they are very forgetful.
Comment from Guest: How are the stages determined?
Peter Rabins: There are several different conceptualizations.
I favor one that identifies three stages: in the first stage, difficulty learning new information is the predominant problem.
In the second stage, people develop difficulties with language and communication, doing every day activities such as using a knife or tooth brush, and in accurately seeing the world, for example not recognizing their own home.
In the third stage, people develop physical problems and become unsteady and fall, lose bladder and bowel control, have trouble swallowing, and may lose the ability to speak.
Comment from Guest: Are there any specific tips that you could give regarding getting through a typical day?
Peter Rabins: Having a scheduled day often helps the person with dementia and therefore also helps the caregiver.
For example, give medications at the same time every day, read the newspaper with the person at 11 a.m. and then have lunch. Go for a walk or a drive in the early afternoon.
Comment from Bobbi G: Makes me feel guilt when I have to sneak out of the facility. Any suggestions on dealing with this situation and the guilt from sneaking out?
Peter Rabins: Guilt is very common in caregivers of people with dementia. I speculate that many situations such as the one you describe make people feel guilty.
Unfortunately, it is often necessary to "sneak out" or even tell a person that their mother will be coming to pick them up later when, in fact, their mother has been dead for many years.
I think it is helpful to discuss this with other caregivers because you usually find that almost everyone in this situation finds themselves doing similar things.
Comment from Guest: What is an example of sundowning behavior?
Peter Rabins: Sundowning is a term used to refer to the fact that many people become more active or restless in the late afternoon or evening.
Other people, though, are more restless in the morning. The time of day is less important than trying to figure out what is occurring in the environment or in the person that is leading to restlessness.
For example, are they becoming tired or fatigued? Is the environment more noisy or less stimulating? Is the caregiver so busy that he pays less attention to the person?
Comment from Guest: I have recently placed my husband in an Adult Care Home. He receives excellent care but when I visit he always tells me to take him home. I tell him this is his home. He says he doesn't know what our home looks like; where it is; how far it is.
Peter Rabins: This is an example of the stage two symptom I described earlier, in which a person loses the ability to recognize familiar places.
It's usually best to try to change the subject, to reassure the person that she is safe where she is, to distract them by asking them to help do something else such as folding clothes or to ask them their favorite memory about the house they grew up in.
Comment from Christine: What is the best way to handle the angry fairly threatening ways that Dad acts out his frustrations at not being able to communicate or understand much of the time?
Peter Rabins: Try to remain calm and not raise your voice, be reassuring that everything is OK, don't physically restrain your dad unless there is a major safety concern and try to distract him by getting him to talk or do something else.
Comment from Guest: What would you say is a prime example of when a person should be placed in a more protected facility?
Peter Rabins: There is no single right time or single indicator that a person should be placed outside the home.
The decision should include such factors as whether the caregiver is overwhelmed, whether the caregiver is able to meet the person's medical and safety needs (for example, are they falling frequently and at risk of hurting themselves), or are their behaviors dangerous to themselves or others.
Comment from Guest: What is the appropriate industry response for the caregiver saddled with a spouse diagnosed and lacks understanding or training in self evaluation (what am I capable of doing) or management of the time, finances, estate or obligations of job (the tasks are daunting for a housewife who embraced her role without a thought about lifting a spouse or filing a power of attorney or getting a brake job).
Peter Rabins: While clinicians and facilities should inform people about the importance of addressing these problems, some family members are emotionally ready to do so.
It is sometimes helpful to wait weeks and bring up the issue again.
Offering people lists of resources might also help. Encouraging people to bring up the issue in a support group sometimes helps them recognize what needs to be done because it comes from a person in a similar circumstance rather than from a professional.
Comment from Guest: What if a loved one does not want to do any of their normal daily activities during the day?
Peter Rabins: Often a person is no longer able to do things they've done in the past. If that is the case, it is better to try to find some other activity that they are still able to do.
Apathy, a severe lack of initiative, is one of the most common symptoms of dementia.
Some people are unable to start or persist in an activity even when they still have the ability to do it because apathy deprives them of this initiative.
Comment from Shannon: What are some ways to balance working and caregiving?
Peter Rabins: This is a very important question. While it is often hard to find the right balance because of the many demands on the caregiver, it is definitely worth trying to carve out some time for yourself.
Finding friends or family who can relieve you, having the person attend a day program, and having the person with dementia participate in a support group are some ways to find time for yourself.
Keep in mind, that a physically and mentally healthy caregiver can better serve the needs of the older person than a caregiver who is frustrated, demoralized, tired, or overwhelmed.
Comment from Guest: What is the best way to greet a relative that has Alzheimer’s?
Peter Rabins: For a person with early dementia, nothing out of the ordinary needs to be done. For a person with more advanced disease, it often helps to say, "Hello, Dad, it's Peter, you look wonderful today."
Comment from Guest: What if a person has trouble remembering the correct word for something. Like sweep, they may say vacuum or some other word. My dad has Alzheimer's and my sister and I worry when we do things we have seen dad do.
Peter Rabins: It is normal to have difficulty coming up with a word or name occasionally, and the older we get the more frequent this becomes.
If you are really worried or developing symptoms such as getting lost in a familiar place, having difficulty doing these you've done easily in the past or never remembering the name or word, then you should talk with a doctor.
Most people have the normal experience that the word or name floats into their head a minute later, often after they have stopped thinking about it.
AARP: Thank you Dr. Rabins for answering these great questions today. We appreciate this invaluable information.
Peter Rabins: I really enjoyed the experience. Thank you for having me.
AARP: Dr. Rabins routinely answers questions on our website. You can find them right here. http://www.aarp.org/home-family/caregiving/info-04-2013/about-alzheimers-dementia-home-care.html
Or for more caregiving resources, we have a Caregiving Resources Center.
You can also find the Caregiving Resource Center on our AARP iPad app too.
Thank you and have a great rest of your day.
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