June is Brain Awareness Month: Helping Caregivers Cope

Caregiver, patient expert
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June is Alzheimer's and Brain Awareness month. What better time to become educated about how to help people who have dementia live a better quality of life, help caregivers with support and resources, and teach others about the many types of dementia and other brain diseases?

The National Alzheimer's Project Act (NAPA) was signed into law in 2011. Since that time, milestones have been identified to meet the plan's biomedical research goals. But until recent years, the creation of similar milestones on patient care and caregiver support has lagged.  In 2014, the Alzheimer's Association Workgroup published recommendations -- including patient-care milestones -- to augment the U.S. Government's "National Plan to Address Alzheimer's Disease."

Among the patient-care strategies recommended by the Workgroup, items include:

  • Build a workforce with the skills to provide high-quality care
  • Ensure timely and accurate diagnosis
  • Educate and support people with Alzheimer's disease and their families on diagnosis
  • Identify high-quality dementia care guidelines and measures across care settings

Among the caregiver-support milestones:

  • Ensure receipt of culturally sensitive education, training, support materials
  • Enable family caregivers to continue to provide care while maintaining their own health and well-being
  • Assist families in planning for future care needs
  • Maintain the dignity and rights of people with Alzheimer's disease
  • Assess and address the housing needs of people with Alzheimer's disease

Dementia: Alzheimer's and Beyond

Alzheimer's disease remains the most common form of dementia. However, dementia is an umbrella term that covers many different types of cognitive illnesses.

Vascular dementia is just slightly less prevalent than Alzheimer's, making it number two on the list of most common types. Lewy body dementia (LBD) and frontotemporal dementia (FTD) are two other types of dementia. LBD, also called dementia with Lewy bodies, often happens when people have Parkinson's disease. Huntington's disease can also be accompanied by dementia.

Most types of dementia are not reversible or curable. However, research suggests a few may be, including normal pressure hydrocephalus (NPH), where too much fluid builds up in brain tissue, and Wernicke-Korsakoff Syndrome which is a type of dementia that often develops due to chronic alcoholism. (It could possibly be reversed if treated soon enough.) Some dementia-like symptoms may be caused by infection, thyroid problems, or medication reactions. These can be reversed once the cause is established and treated.

Dementia is, of course, physically and emotionally devastating. However dementia is also a financial nightmare for most families. In an interview that I recently conducted with the Alzheimer's Association's Vice President of Constituent Services, Beth Kallmyer, she noted that "the Alzheimer's Association has known for a very long time that Alzheimer's is a costly disease. The survey helped us to understand how Alzheimer's was affecting the everyday lives of people. We found that 50 percent of the families were cutting back on basic necessities -- things like food, transportation, medical care. This showed us that very few people were prepared for the cost of caring for somebody with Alzheimer's.”

While awareness is producing changes, there is still a long road to travel. The NAPA is attempting to do just that. June as Alzheimer's and Brain Awareness Month is the perfect time to spread the word in a way that brings the message to lawmakers, as well as the general public.** See More Helpful Articles**

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Carol Bradley Bursack is a veteran family caregiver having spent over two decades caring for a total of seven elders. She is a longtime newspaper columnist and the author of “Minding Our Elders: Caregivers Share Their Personal Stories,” as well as a contributor to several additional books on caregiving and dementia. Her websites can be accessed at www.mindingourelders.com. Follow Carol on Twitter @mindingourelder_ and on Facebook _Minding Our Elders.