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Getting Good Information: Caregivers, Sundowners Syndrome, Dementia - Aging Wisely

We read a lot of forums, websites, books and articles about all matter of topics related to aging and elder care.  With the explosion of information available on the web and, in particular, social media and forums for comments and feedback, there are many caregivers benefiting from sharing information and connecting with others in similar circumstances.

However, the downside to the information superhighway is that it can take you on a lot of wrong turns.  We all know the stories of ways the internet has been used by con artists for scams, but another less obvious concern is filtering through information to ensure you are getting accurate information or advice.

caregiver seeking information on sundown dementia

Both online and offline, we see a lot of misinformation about dementia and related terms like sundowners syndrome, Alzheimer’s disease and memory loss.  It is not uncommon when a family comes to see us to hear that they have not been able to get specific answers about what is going on with a loved one who is having cognitive issues.  Sometimes this is due to fear and no one wanting to seek a specific diagnosis, other times certain assumptions have been made (the symptoms are just “old age”) and occasionally the family has gotten blatently incorrect information.

Here are some words of advice for seeking information as a caregiver, whether on issues like sundowners syndrome, dementia, caregiving or preparing for eldercare:

  1. Seek expert sites on the specific topic.  Start with sites such as disease-specific organizations and trusted resources with long histories. 
  2. Find out who is providing the information and review their “about us” closely.  What are the academic backgrounds and qualifications of the people writing the information?  If you cannot locate an “about us” page, you should probably seek information elsewhere.
  3. The best information to get from other caregivers is support and ideas on how they have handled situations.  When it comes to diagnoses, care planning and choosing specific resources, a professional opinion usually serves you better.  Here are some areas where we see particularly bad (or just misguided) information being shared: legal advice, qualifying for benefits/programs and how to do so, diagnosis and treatment information, terminology and resources.  Many times it is not that the information is purposely harmful, it just doesn’t necessarily apply to your situation.
  4. Stay away from judgmental or negative commentary.  It is the last thing you need as a caregiver.  If you review a Facebook group or forum site and notice people sharing strong opinions of what a caregiver should or should not do, this may not be a supportive atmosphere for you.  Negativity (and even things like political ranting) can cause you greater anxiety.
  5. Just like with other aspects of caregiving, strategize which ways the internet and technology can help you most.  For example, reading too much about a relative’s diagnosis might be scary at first.  Instead, seek information on which physicians or hospitals specialize in treatment or who offers local support groups.  Setting up an online personal health record or using a communications system/online community can be very helpful to caregivers.
  6. Use a combination of information sources to seek resources/care providers.  When you are trying to find options such as in-home care, assisted living, and benefit programs, you may be best served by having professional help in pulling together a care plan.  This can save you a lot of hours of research and heading down the wrong roads.

More specifically, when it comes to dementia concerns, here is some specific advice we offer to caregivers who may be seeing signs of sundowning or cognitive changes:

  1. Make a list of symptoms, concerns, and behaviors.  When did you notice symptoms? Have their been medical or other changes? How are symptoms affecting functioning?
  2. Get past “terminology confusion” by understanding the basic terminology related to memory loss and dementia–check out our dementia fact sheet which you can download at the bottom of this post for a concise overview.
  3. Seek a diagnostic workup from a memory clinic, geriatric specialist, or neurologist.  A complete workup will serve to rule out reversible causes and include a case history (benefiting from the information collected above) and evaluation of symptoms.
  4. Find a support group, online or in person, that fits you.  There are groups for various stages and situations, as well as groups for both caregivers and the person who is diagnosed.
  5. Seek out books and fact sheets from the disease-specific organization.  The Alzheimers Association has great information on an array of topics, which you can get online or at a local office.  Aging Wisely has a page of some recommended reading for dementia caregivers as well.
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