Last week the world lost a larger than life figure. A man who parted the Red Sea in “The Ten Commandments” and raced chariots in “Ben-Hur.” Charlton Heston, 84, was one of Hollywood’s greats. An Oscar award winner who was passionate about his beliefs. For many people Charlton Heston become synonymous with the NRA due to his passionate support of the right to bear arms. However, it was in August 2002 that Heston took on his biggest batter, his fight against Alzheimer’s. In 2002 Heston told CNN that he was diagnosed with Alzheimer’s and said, “If you see a little less spring in my step, if your name fails to leap to my lips, you'll know why. And if I tell you a funny story for the second time, please laugh anyway…I’m neither giving up nor giving in…I must reconcile courage and surrender in equal measure.”

It was with this silent dignity that Heston faced a disease that is still so largely misunderstood and one that impacts families so greatly. Heston was not the first public figure to be diagnosed, nor will he be the last. The late president Ronald Reagan brought Alzheimer’s to the public conscience. However each day millions of families grapple with a disease that slowly robs loved ones of cherished memories. According to the Alzheimer’s Associate there are nearly 5 million Americans with Alzheimer’s and it is projected that by 2050 there will be 16 million people in this country living with this silent killer. Alzheimer’s is the 7th leading cause of death in America.

These grim statistics leave out one very important aspect of Alzheimer’s. This disease requires extensive caregiving and for most it is a family affair. Spouses and adult children struggle each day to be able to care for their loved one. Caregivers are not trained to deal with the emotional and physical demands of caring for people who are living with this disease. Research has shown that caregivers tend to not take care of themselves instead focusing on their loved ones. Caregivers are at a much greater risk of developing chronic heath conditions and depression. According to Rosalynn Carter in “Addressing the Caregiving Crisis” appearing in Preventing Chronic Disease Jan 2008 editorial nearly one-third of family caregivers of people with dementia were depressed.

Families often feel overwhelmed and feel they have no where to turn for help. The medical establishment has started to recognize that in order for caregivers to be able to give care so Alzheimer’s patients can remain at home for as long as possible and in order for families to be able to weather this exhausting role there needs to be some support. The Rosalyn Carter Institute for Caregiving/Johnson and Johnson recently awarded Anita Royer, LICSW, and the Fletcher Allen Psychiatry Service/Neuroscience Research Unit one of 5 national grants to replicate evidence based research into community programs designed to support individuals with Alzheimer’s and their family caregivers.

Fletcher Allen Primary Care physicians will work with families impacted by Alzheimer’s Disease. This program is comprised of individual and family counseling, support groups and telephone support for families dealing with the strain of caring for a loved one with Alzheimer’s’. Researchers at the NYU School of Medicine’s Silverstine Institute have seen the results of providing counseling to family caregivers. Counseling families decrease depression and enables spouse caregivers to postpone or prevent nursing home placement according to The New York University Caregiver Intervention.

According to the American Academy of Neurology family caregivers who receive counseling have a greater tolerance for the patient memory and behavior problems and improved satisfaction with the support provided by family and friends. A critical component of this program is that other family members in addition to the spouse attend which minimizes family conflict and gives the caregiver support. Counselors also provide information on financial planning and management of patient behavior problems. The study found that caregiver spouses who received counseling delayed placing their spouse in a nursing home by one and a half years.

Just as doctors are looking to treat the whole person and not just the disease the medical establishment now realizes that not only do we need to treat the patient but the support system and caregivers of the patient. Individuals do not walk down this road by themselves; they walk side by side with family members and loved ones that need support and understanding.

Facing Alzheimer’s With Hope
Caregivers Conference
April 30
Capitol Plaza Hotel
Montpelier, VT
www.alz.org/vermont
802-477-7000

Sarah Lemnah writes on senior issues for the Champlain Valley Agency on Aging. This article originally appeared in the Burlington Free Press.