One common gripe of caregivers for loved ones with Alzheimer’s Disease (AD) is the lack of communication from their doctors, especially at or shortly after the office visit when a diagnosis of probable AD is issued. It is in the period immediately following an AD diagnosis when caregivers and patients have many questions and the most need for accurate helpful information. Doctors should be providing their AD patients and caregivers with two kinds of information ... medical and non-medical.
First, doctors should inform patients and caregivers about what to expect medically as a result of an AD diagnosis. They need to explain that whereas no two people with AD necessarily follow the same pattern of decline, some common symptoms and behaviors can be expected as the disease progresses. Doctors should mention that those with AD may decline extremely quickly over a period of just a few years, or slowly over the course of as many years, but that AD is a terminal disease with no effective means of treatment ... and with no cure. Doctors should present information on the current medication available, but must be careful to note that such medications have only proved effective in slowing down the rate of decline for a few months to perhaps a year or two for some people with AD. 1. Doctors should also present information on clinical trial options.
However, just as important as this medical information, doctors should also be informing patients and caregivers about helpful non-medical information. Doctors should discuss the importance of joining support groups to find both emotional support and learn more helpful information from others in similar situations. Doctors should be informing patients and caregivers about the importance of end of life planning. And doctors should be informing patients and caregivers about online sources of information.
Currently, the vast majority of AD caregivers I am in contact with report that their doctors never mentioned anything about joining AD caregiver support groups, and never told them where to go or whom to contact to learn more about support groups. This practice must change. Increasing numbers of technologically savvy adults will be diagnosed with AD in the years ahead. Doctors should routinely be suggesting internet sites they can consult for information, help and support. This is especially important for doctors serving patients and caregivers in areas of our country not well served by support groups. Online support groups are the next best option in such situations and may even prove superior to ineffective weekly groups, or support groups that only meet bi-weekly or monthly.
I recognize that caregivers can go online by themselves to check out AD sites. However, one problem in the internet age is the lack of quality control among online sites. Given their knowledge about AD and what caregivers need to know, doctors can easily screen some internet sites and suggest several helpful websites that can provide immediate guidance for their newly diagnosed AD patients and their caregivers. Doctors who update their familiarity with internet sites even once a year for an hour or two to help their patients and caregivers would not be incurring an overly time-consuming burden.
Following are sites that I have found most helpful in my role as an AD caregiver. I visit some sites on a daily basis, some only occasionally, and some only when seeking specific information or the answer to a specific question. Some sites automatically send daily or weekly updates to my email inbox. Whereas other caregivers may suggest sites not listed here, this listing can certainly serve as a starting point for doctors who want to better inform both their patients and caregivers.
- My favorite site for interacting with others in my situation … spouses of people with AD … is at www.thealzheimerspouse.com. This site allows me to have a support group available to me on a multitude of distinct topics, 24/7. The site is coordinated by Joan Gershman, a caregiver whose husband has AD (and diabetes and Parkinson’s). The insight gained through Joan’s blog postings is justification enough to visit frequently. However, in addition to the blogs, her site provides very comprehensive and helpful information just a click away. The site’s message boards allow caregivers to post questions and receive answers from others dealing with similar issues. Although I have been meeting weekly with fellow spouse caregivers for more than four years, I still check this website each day to read postings and comments. I also start a new message board “thread” seeking the advice of other spouse caregivers when I want to know how others in my situation have handled a specific issue. There is a lot of “collective wisdom” from other spouse caregivers on those message boards. I can envision this site being most valuable for people not living in areas where they can participate in good weekly caregiver support groups. In my opinion, this is simply the single best internet site for spouse caregivers!
- My favorite source for obtaining daily information about current research and newly released studies, as well as links to other helpful resources, is the Alzheimer’s Daily News which comes directly to my email inbox each day. A publication of the Ageless Design Research Foundation, one can subscribe to this source by going to www.agelessdesign.com or to www.alznews.org. Each newsletter has a brief description of a recently published study or other AD information with a link to follow up to read more if interested, as well as a link to a support group (that I do not participate in) and a store selling AD products.
- One can also sign up for a daily or weekly Alzheimer’s Newsletter reporting on recent research studies at www.medicalnewstoday.com. I often find myself checking further on items in my daily/weekly newsletter from this source. Often there will be the same news articles as in Alzheimer’s Daily News, but sometimes I find other news articles worthy of follow-up.
- The national websites of both the Alzheimer’s Association and Alzheimer’s Foundation of America have lots of helpful information and can refer one to local resources and support groups as well. In fact, when I was dissatisfied with support groups available to me through the Alzheimer’s Association, my visit to the Alzheimer’s Foundation website led me to learn about LIAF, the Long Island Alzheimer’s Foundation where I found weekly support groups designed exclusively for spouse caregivers ... and support groups for those in early to moderate stages of AD for my wife to attend. Each national site also maintains online support groups, but I have not found them anywhere near as helpful as the online support group at TheAlzheimerSpouse.com. Go to www.alz.org for the Alzheimer’s Association website, or to www.alzfdn.org for the Alzheimer’s Foundation of America website.
- USAgainstAlzheimers, sometimes referred to as USA2, is a national organization that engages in “public advocacy, federal relations, grassroots activity and voter relations” on behalf of those with AD and their caregivers. They also have a Political Action Committee (PAC) to support legislators and legislation, an activist network, and an organizational network whose goal is to end Alzheimer’s by the year 2020. Their chairman and co-founder is a member of the National Alzheimer’s Project Act (NAPA) Advisory Council. Their website also posts stories from caregivers and other helpful information, blogs, news, and activist information. Go to www.usagainstalzheimer’s.com.
- the National Institute on Aging’s Alzheimer’s Disease Education and Referral Center (ADEAR) provides complete information on all AD clinical trials and all Alzheimer’s Disease Research Centers. This is the government center for AD information can be accessed at www.nia.nih.gov/Alzheimers. There is also a lot of AD information available from the National Institutes of Health. Their site provides such helpful information on stages of AD, treatment options, clinical trials, etc. at www.nlm.nih.gov/medlineplus
- New York University’s Fisher Center for Alzheimer’s Research Foundation issues a monthly newsletter that one can sign up for at www.alzinfo.org. This NYU site also has a link to “Clinical Stages of Alzheimer’s,” that I have found to be the single best timeline to clearly alert caregivers about what they should expect as their loved one declines through the early, moderate, and severe stages of AD.
- There is a great deal of AD information at www.mayoclinic.com, including valuable information about AD symptoms, stages, treatments, etc. One can also sign up for their Alzheimer’s Caring Newsletter to come directly into one’s email inbox. In addition, a Mayo Clinic health education outreach coordinator maintains an Alzheimer’s blog site that encourages caregiver to post comments. This site is for all caregivers, not just for spouse caregivers. For reasons that continue to mystify me, the site is incredibly difficult to locate from their main site and from their AD information pages. But one can access the blog site by going directly to: www.mayoclinic.com/health/caregiving/MY00395/TAB=expertblog.
- The Johns Hopkins website has lots of helpful information similar to that which is found at the Mayo Clinic site. They also issue a Health Alert on Memory that can go directly into your email inbox several times each month. To access their information about causes, symptoms, treatment of AD, etc. one can go to their main website at www.hopkinsmedicine.org. To sign up for their AD health alert newsletter, one can go to www.johnshopkinshealthalerts.com.
- The University of California, San Diego Alzheimer’s Disease Cooperative Study issues a monthly newsletter with information about recent research sponsored by the National Institute on Aging (NIA). In cooperation with the University of California, San Diego, their newsletter also has information on new AD clinical trials and ongoing AD research, as well as links to other helpful sites. One can access all of this information by going to www.adcs.org.
- At the Alzheimer Research Forum, one can subscribe to a weekly newsletter about current research articles and studies. Go to www.alzforum.org.
- One reliable information site for many health topics is “webmd” and one can sign up for their AD newsletters at www.webmd.com/alzheimers/news.
- A comprehensive site for all science topics is at www.sciencedaily.com. This site provides the latest news is many different areas of science ... nature, engineering, etc. along with health topics. One can sign up for their free AD newsletter to come directly into your inbox with the latest news about AD research.
- Information about helping the elderly with AD, along with message boards for posting comments (and a site looking to provide additional resources and help somewhere down the line) can be found at www.caring.com.
- A website coordinated by Cornell Medical College to help caregivers prepare a safe home environment for someone with Alzheimer’s can be found at www.ThisCaringHome.org.
- Another website that posts newspaper and journal articles dealing with major health issues is My Healthy Today. You can sign up for their free monthly Alzheimer’s Disease newsletter to come directly into your inbox each month at www.myhealthytoday.com.
Finally, I would respectfully recommend that doctors take a look at my own website ... begun in August, 2013, at the specific request of several medical journal editors and national AD organizations ... www.allansvann.blogspot.com. I would suggest that some doctors could learn something from my articles to gain the perspective of an AD caregiver, and may wish to also consider recommending my site to their patients and caregivers for more information.
1. A.S. Vann. “Current Alzheimer’s Medications: Effective Treatments or Expensive Bottles of Hope?” Journal of the American Medical Directors Association. August, 2013, Vol. 14, No. 7, pp. 525-526.
A severely edited version of this article was published in Caring for the Ages, the monthly newsletter of the American Medical Directors Association. January, 2014. Vol. 15, No. 1, P. 11. Online only.