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Getting Good Information: Caregivers, Sundowners Syndrome, Dementia

from Aging Wisely Blog

Getting Good Information: Caregivers, Sundowners Syndrome, Dementia: 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.

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

FirstHealth dementia care

Richmond County Daily Journal - Caregivers Family Night to focus on FirstHealth dementia care: FirstHealth dementia care

Melanie Bunn; geriatric nurse practitioner, a dementia training specialist with Alzheimers North Carolina and an instructor of nurses with Duke University’s School of Nursing, .... her life’s work, ... involves the care and concerns of people with dementia.

Bunn’s role with the Moore Regional nursing staff has focused on building a “care-giving team” with the appropriate tools and knowledge for the individualized care of individuals with “altered mental status.” That can mean the temporary confusion that can accompany an acute illness or the vast mental and physical losses of advanced dementia.

The hospital’s revised protocols on these patients with altered mental status begin at admission during the routine medical assessment that is required of every patient. Patients with an appropriate diagnosis get a gray armband that identifies their altered mental status to the entire care-giving team, and the information is documented in their patient record.

Additional hospital protocols for patients with altered mental status focus on individualized care approaches and specified methods of communication. They also include environmental suggestions for maintaining a “safe, calm, non-threatening environment” such as encouraging frequent family/familiar caregiver visits and avoiding visual and/or auditory elements that could disturb the patient even more.

According to Cheryl Batchelor, R.N., Moore Regional’s executive director of clinical operations, the protocol revisions followed a study of the hospital’s dementia care-giving practices after the husband of an Alzheimer’s patient had raised some concerns.

“He felt we needed to acknowledge the special needs of people with dementia,” Batchelor said. “We thought we were doing a good job, but we were not looking at individualized needs.”
After hearing examples to the contrary during a meeting with the patient’s husband and two other relatives of patients with dementia,

Batchelor, physician champion Jenifir Bruno, M.D., of Hospitalist Services and other members of the FirstHealth nursing staff formed a task force with “cross representation” from all three FirstHealth hospitals.

“We involved as many (disciplines) as possible,” said Tabitha Stewart, R.N., a nurse clinician with Moore Regional Clinical Practice/Professional Development.

Team members reviewed medical literature and contacted other hospitals and various specialists in the area of dementia care. Results included revised educational materials and protocols that were approved by FirstHealth’s Nurse Practice Council.

The admissions database was revised to improve the screening of dementia patients, and the Information Technology department developed a special music-only TV channel for patients who don’t cope well with noise. In addition to Bunn, expert contacts included Dr. Eleanor McConnell of Duke’s Center of Excellence in Geriatric Nursing Education, and Alice Watkins, executive director of Alzheimers North Carolina.

As the various initiatives were rolled out, family caregivers continued to be involved and are pleased with the results. In a recent email, the family member who raised the initial concerns shared the following story about another family:

“At a Dementia Caregiver’s Support Group meeting this week, a participant shared a story about a recent MRH ED visit with her loved one who has dementia. The visit was precipitated by a fall, which resulted in a nasty cut on the forehead. She indicted that he was given a gray wristband. But, more importantly to her, she said the staff seemed much more empathetic to his dementia and accommodating to her than during her previous ED visits, the most recent being about six months ago.
“She additionally noted that upon asking she was allowed to accompany him to imaging where they provided a chair for her while he was given a CT scan.

Read more: Richmond County Daily Journal - Caregivers Family Night to focus on FirstHealth dementia care

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John Charles Robbins