National Alzheimer's Disease Awareness Month - Focusing on the caregivers

Wednesday, November 16, 2016

Elise Sebastian  
Elise Sebastian, MSW, LSW, Director of Clinical Outreach, Alzheimer's Association of Greater Cincinnati  

The numbers don’t lie.

Today, approximately 5.4 million Americans are affected by Alzheimer’s disease, a figure that is expected to triple by the middle of the century. In Greater Cincinnati alone, there are an estimated 55,000 individuals affected by Alzheimer’s or a related dementia. Alzheimer’s disease is now the sixth-leading cause of death in the United States and the only one of the disease-related in the top 10 without an effective treatment or cure.

And that doesn’t even take into account the tens of millions of caregivers who struggle daily with the various physical and emotional challenges associated with caring for a loved one with dementia.

Alzheimer’s disease affects men and women equally and knows no social or economic boundaries. It is a neurodegenerative, progressive disorder that affects memory, as well as a person’s cognitive, functional and motor skills. To date, there is no cure or prevention, although in the past 25 years great strides have been made in the understanding of the pathogenesis and molecular mechanisms of this confounding and devastating disorder.

Alzheimer’s disease costs American society approximately $220 billion annually - taking into account everything from lost employee productivity to increased healthcare costs. As our “baby boomer” population ages, these costs will continue to grow at an alarming rate.

November is National Alzheimer’s Disease Awareness Month and National Family Caregivers Month. During November, the Alzheimer’s Association is focusing its attention on an important intersection between these two events – the unique challenges facing Alzheimer’s and dementia caregivers.

It is estimated that more than 15 million Americans provide unpaid care for people with Alzheimer’s and other dementias.

Caring for a person living with Alzheimer’s or another dementia can take a severe emotional, physical and financial toll on the individual providing it. Consider the following: 

  • Fifty-nine percent of family caregivers of people with Alzheimer’s and other dementias rated their emotional stress as high or very high. Additionally, about 40 percent of family caregivers of people with dementia suffer from depression, compared with 5 to 17 percent of non-caregivers of similar ages.
  • Due to the physical and emotional impact of caregiving, Alzheimer’s and dementia caregivers had $10.2 billion in health care costs of their own in 2015.
  • Caregivers for someone with Alzheimer’s or another dementia experience work-related challenges upon the start of their caregiving. Fifty-four percent of caregivers for someone with Alzheimer’s or another dementia had to go in late or leave early, and 15 percent had to take a leave of absence.

It’s important for caregivers, and family and friends closest to them, recognize these common signs of caregiver stress:

  • Denial about the disease and its effect on the person who has been diagnosed.
  • Anger at the person with Alzheimer’s or frustration that he or she can’t do the things they used to be able to do.
  • Social withdrawal from friends and activities that used to make you feel good.
  • Anxiety about the future and facing another day.
  • Depression that breaks your spirit and affects your ability to cope.
  • Sleeplessness caused by a never-ending list of concerns.
  • Irritability that leads to moodiness and triggers negative responses and actions.
  • Lack of concentration that makes it difficult to perform familiar tasks.
  • Health problems that begin to take a mental and physical toll.

An important key to good caregiving is a healthy caregiver. Managing caregiver stress is essential and benefits both the caregiver and the person under their care. To help manage caregiver stress, the Alzheimer’s Association offers these suggestions:

  • Find time for yourself. It's normal to need a break from caregiving duties. No one can do it all by themselves. Consider taking advantage of respite care or help from family and friends to spend time doing something you enjoy.
  • Know available community resources. Contact your local Alzheimer’s Association office to locate dementia care resources in your area.
  • Become an educated caregiver. Understanding the disease, its progression and accompanying behavioral and physical changes can help you become a better caregiver.
  • Build a Support Network. Organize friends and family who want to help provide care and support. Access local support groups or online communities to connect with other caregivers. If stress becomes overwhelming, seek professional help.
  • Take care of yourself. Try to eat well, exercise and get plenty of rest. Making sure that you are healthy can help you be a better caregiver.
  • Manage stress. Stress can cause physical problems (blurred vision, stomach irritation, high blood pressure) and changes in behavior (irritability, lack of concentration, changes in appetite). Note your symptoms and discuss with a doctor, as needed. Try to find relaxation techniques that work for you.
  • Make legal and financial plans. Putting legal and financial plans in place after an Alzheimer’s diagnosis is important so that the person with the disease can participate. Having future plans in place can provide comfort to the entire family. Professionals specializing in elder or long-term care planning can help.
  • Know you're doing your best. It's normal to lose patience or feel like your care may fall short sometimes. You're doing the best you can. For support and encouragement, join ALZConnected, our online caregiver community.
  • Visit your doctor regularly. Take time to get regular checkups, and be aware of what your body is telling you. Pay attention to any exhaustion, stress, sleeplessness or changes in appetite or behavior. Ignoring symptoms can cause your physical and mental health to decline.

When President Ronald Reagan first proclaimed National Alzheimer’s Disease Month in November of 1983, the Alzheimer’s Association was just three years old. At the time, there were no treatments available to those affected by the disease and caregivers had few, if any, sources of support and information.  

Much has changed over the past 30 years, with significant advances in research and the development of informational and supportive service centers. Still, we are far from a cure and our current health care system cannot adequately deal with the impending epidemic.

As 2016 marks the 33rd anniversary of National Alzheimer’s Disease Awareness Month in the United States, the Alzheimer’s Association works to meet the increasing demand for services as a growing number of people are touched by this degenerative and ultimately fatal brain disease.

For more information on the Alzheimer’s Association or to access our services, please call our 24/7 Helpline at (800) 272-3900 or visit