Alzheimer's and you: Honoring caregivers

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Diane Walker
Diane Walker
By: Diane Walker, Editor, Caring Times

In November, we celebrate two closely related months of national recognition: National Alzheimer's Disease Awareness Month and National Family Caregivers Month. Alzheimer's disease is the most common type of dementia, affecting more than 5.3 million Americans. That number is expected to grow up to 11 million by 2050—unless there are significant medical advances in prevention or more effective treatment of the disease.

Alzheimer's disease does not just affect the diagnosed individual, of course. In addition to professional caregiving that might come into play, family members, particularly spouses, provide most of the care for someone with the disease in this country. Caring for a loved one with dementia places that family member at risk physically and mentally. With so many people affected, now is the time to make sure everybody's aware, and pay tribute to those dealing with this challenging condition.

Dementia mainly affects older adults with the likelihood of its development doubling every five years after the age of 65. Although the incidence of dementia before 65 years of age is growing, the greatest risk remains advancing age.

As the disease progresses, most people with Alzheimer's disease require care, ranging from assistance with the activities of daily living in the early stages, to personal, around-the-clock care for those with advanced Alzheimer's.

“There are four kinds of people in the world: those who have been caregivers, those who are currently caregivers, those who will become caregivers, and those who need caregivers,” according to Rosalynn Carter, former first lady and president of the board of directors for the Rosalynn Carter Institute for Caregiving.

1 in 6 touched

In the United States, it is estimated that 50 million people per year are actively involved in caregiving, assuming the roles of service provider, companion, advocate and decision-maker.

Of those 50 million, 11 million Americans provided 12.5 billion hours of unpaid care to individuals with Alzheimer's disease, equal to about $144 billion dollars last year alone.  These caregivers are often negatively affected on personal, emotional, financial and social levels. As you know, caring for a person with Alzheimer's or any other form of dementia can be very difficult and can result in high levels of emotional stress and depression, referred to as “caregiver burden.”

We must realize that some caregivers are more vulnerable to burden and poor health because of advanced age, employment status, inadequate social support or the intensity of the care. Often, families prefer to keep their loved one with Alzheimer's at home for as long as possible. To do that, they require support from community resources and often need respite provided by professional caregivers. 

Although there is no treatment available now to prevent deterioration of the brain cells that cause Alzheimer's disease, the recent report by the Alzheimer's Disease Neuroimaging Initiative showed that a spinal fluid test could accurately predict the development of Alzheimer's disease in people with a signature level of abnormal proteins. Because Alzheimer's starts decades before people have symptoms, these findings can be used in clinical drug trials to slow or even stop the disease.

As the first wave of baby boomers reach their 65th birthday in 2011, demands for healthcare services from the rapidly growing elderly population will significantly affect healthcare and its staffing needs. The National Academy of Sciences estimated that just to maintain the current levels of staffing, more than 3.5 million additional formally trained healthcare providers would be needed by 2030.

To meet the needs of the growing dementia-afflicted population, physicians, nurses, professional caregivers, social workers and other healthcare providers are being encouraged to complete educational/clinical programs now.
It is time to recognize that the number of people with Alzheimer's is growing incredibly. It is also time we learn more about this disease, and additional ways to provide care. We also need to develop social and medical support for people with Alzheimer's—and their family caregivers.

The author is the editor of Caring Times, a publication and website for family caregivers and healthcare professionals, and vice president of Learning & Performance Systems at Griswold Special Care.