After reading the results faced by caregivers, concerns about disease progression and discussions with health care professionals which was done by National Survey Co-Sponsored by Alzheimer’s Foundation of America, Eisai and Pfizer Sheds Light on Difficulties Faced by America’s Alzheimer’s Disease Caregivers; I decided to ask Barry W Rovner, MD for an interview.  Dr Rovner is director of the Division of Geriatric Psychiatry and professor in the departments of Neurology and Psychiatry at Thomas Jefferson University, Philadelphia.  We spoke this past Friday.

To begin with I asked Dr. Rovner; if he would please define “Professional Caregiver” for us as I believe many “Family Caregivers” define this role differently.   Dr. Rovner said he views “Professional Caregivers” in such roles as Doctors and Nurses; people who have a type of standardize training.  All other Caregivers fall into an “Informal” category.  I too agree with his answer but also feel that most “Family Caregivers” view anyone we hire as a “Professional.” 

I also do not want you to think that Dr Rovner or I are at all minimizing the importance other Caregiving roles.  As we progress as a society this roles will continue to twist and turn as needs arise and the public demands assistance in various modes.  Personally, I fall into the category of “Informal Caregiver.”  I am a Daughter who has learned through trial and error on my Mother’s journey with Alzheimer’s disease.

The reason I bring this particular question to light, is that is it very important for Family Caregivers to understand the differences.  There may or may not be standards for the people we hire to assists us with our loved ones who have Alzheimer’s disease.  It is our responsibility as Caregivers to perform our due diligence and explore qualification standards of those we hire. 

Please don’t mistake what I am saying to be only hire someone with “Standardized Training;” as in some fields, states, and counties there is no formal training or standards set in place.  In these instances, I suggest you conduct a thorough interview, check references, and have a specific contract for the work performed and how services will be delivered…

Next, I would like you to read this portion of the study and after we will continue with my interview with Dr Rovner.  Specifically, we will focus on how to communicate with your Doctor.

Difficulties Faced by Caregivers

• 55 percent of AD caregivers surveyed said caring for their loved one has taken a toll on their own health
• Women surveyed were more likely to worry “all the time” compared to men [13 percent versus 3 percent].  Also, women were less likely than men to feel that they have enough support to take care of themselves and their own needs [60 percent versus 76 percent]
• 60 percent of AD caregivers surveyed said they feel overwhelmed
• Women surveyed were more likely to consider “maintaining relationships with family or friends” as a challenge compared to men [47 percent versus 31 percent]
• 84 percent of caregivers of loved ones with severe AD surveyed said caregiving frequently stops them from participating in activities that they enjoy, which is more than caregivers of loved ones with mild (67 percent) and moderate (68 percent) AD

Concerns about Disease Progression

• The three greatest caregiver concerns about the progression of their loved one’s AD were memory loss (41 percent), personal safety (33 percent) and confusion (27 percent)
• 67 percent of AD caregivers surveyed named at least one change in cognitive symptoms as a main concern about the progression of their loved one’s AD
• Men surveyed were more likely to be concerned about memory loss compared to women [50 percent versus 37 percent]

Discussions with Health Care Professionals

• Men surveyed were more likely to be satisfied with communication with their health care professional compared to women [84 percent versus 70 percent].  Also, men were more likely to regularly discuss options for information or support [26 percent versus 14 percent]
• 53 percent of AD caregivers surveyed who said they were not very involved (somewhat or not at all involved) in these interactions were dissatisfied with their loved one’s treatment, as compared with 31 percent who said they were engaged

In a press release I received earlier, Dr.Rovner stated, “AD Ccaregivers’ are typically the first to notice when their loved one’s symptoms are becoming worse and whether the disease may be progressing to the next stage, which is why caregivers are essential partners in disease management discussions.  In the face of this devastating chronic and progressive disease, it is important for AD caregivers to know about the available educational resources, support networks and treatments in order to enhance these discussions at all stages of the disease.”

I asked Dr Rovner; “When it is appropriate to communicate with a Doctor?”  His answer was simple and clear.  “When you think your loved one is acting “distinctly” different.”  This means not just simple occasional forgetfulness, but is their memory loss interfering with their daily living.  For example, are they no longer able to track a conversation or follow directions?

So now we know when to contact a Doctor, but what is helpful for us to tell them and how should this information be delivered?

Dr Rovner highly recommend that Caregivers journal specific changes.

1.  When they occur (day, date, and time)
2. Where it is occurring  (location, who is around when it happens, and what happened just prior to)
3. How are they different in this situation (what was typical and what is happening now)
4. How often does it occur (it’s important to record each time it occurs as a pattern might show, or a particular trigger which can be changed)  

“So do you have any suggestions Dr Rovner on how families should communicate the information gathered to the Doctor?” I asked.

Dr Rovner, said he has found it best for Caregivers to be present at the Doctors appointment.  I too agree, but as a Family Caregiver who ‘has always been present, I personally found it was best to deliver the information to the Doctor prior to the appointment.  This way the Doctor could review such and be prepared to address concerns, without the Caregiver looking like you are tattling.  I know we had an exceptional Doctor who allowed us to email or fax our data to his nurse prior to meeting.  We were also able to call and talk with his personal nurse anytime during business hours.  This process was such a relief to us as a family and also reduced my Mother’s anxiety when we went to the Doctor.  Mom never felt attacked by us, nor the Doctor as he was viewed by my Mother as a professional who was asking questions and making comments to help her, as that is what Doctors do.  I highly recommend you ask the Doctor you are working with how to communicate your concerns.  If you don’t have Power of Attorney for your loved one, I recommend you contact an Attorney to get one, as you will most likely need one given requirements in the Healthcare field.

Another option is for the Caregiver to make a separate appointment with the patients Doctor.  As a Caregiver myself, I question the ability of most Caregivers to do this, one from a time stance and two from an economic sense. Keep in mind, this is definitely is an option and might work beautifully for some; especially those who already use the same Doctor.

Dr Rovner, also had some suggestions for AD Caregivers as to where to start in terms of gathering resources.  He mentioned the following links as a good start for people.  Please note they are in no particular order.

1.  Eye on Alzheimer’s

www.EyeonAlzheimers.com

1. Alzheimer’s Foundation of America

http://www.alzfdn.org/

1. Alzheimer’s Association

www.Alz.org

1. The Book – 36 Hour Day

http://www.amazon.com/36-Hour-Day-Alzheimer-Dementing-  Illnesses/dp/0446610410

1. American Association for Geriatric Psychiatry

http://www.aagpgpa.org/

1. Geriatric Mental Health Foundation

http://www.gmhfonline.org/gmhf/

In addition, of course I would like to mention

1. Alzheimer’s Speaks

www.AlzheimersSpeaks.com

1. National Association of Professional Geriatric Care Manager

www.Caremanager.org

In wrapping up our interview Dr Rovner shared these important words to Caregivers, “Be flexible in your care plan.” 

Remember, Alzheimer’s is a fluid disease which ebbs and flows without notice.  The best way to feel in control is to let go of the idea that you are in control of this disease in the first place.

To view the full press release, see below or visit http://www.prnewswire.com/news-releases/alzheimers-disease-caregivers-identify-memory-loss-personal-safety-and-confusion-as-top-three-concerns-related-to-progression-of-their-loved-ones-disease-104935889.html