When Memory Doesn't Serve ... Caring for a Family Member with Dementia
While we often hear about an elderly person, "He's still sharp as a whip," the truth is that some form of dementia is a common reason for the need for family caregiving. According to the Alzheimer's Association and the National Alliance for Caregiving, there are 8.9 million people in the U.S. caring for someone over the age of 50 who has dementia. This is a full 20 percent of all family caregivers in this country. And the chances of getting dementia increase as we age. Studies show that dementia prevalence increases from five percent of those aged 71-79 years to 37.4 percent of those aged 90 and older.*
Richard and Anne have been married for almost 50 years and raised two sons together. Two years ago, after a fairly quick decline in his mental capacity, Richard was diagnosed with Alzheimer's Disease. Anne now finds herself spending many hours per day taking care of Richard's daily needs. Their story sheds a helpful light on some of the complexities of caring for family members with dementia that can be particularly confusing and stressful.
While we often confuse dementia with Alzheimer's disease, there is actually a difference: Dementia describes a group of symptoms that includes short-term memory loss, confusion, an inability to problem-solve, and, sometimes, personality changes or unusual behavior. Symptoms in a person with dementia fluctuate, and the condition doesn't necessarily get worse over time. Alzheimer's Disease, on the other hand, is a progressive form of dementia which worsens to a known outcome. Alzheimer's affects approximately 50 percent of those over the age of 85 and, unfortunately, is considered irreversible; there is no cure, though there are medications that can slow the progression of the disease.
As a caregiver, it is very important to get a correct diagnosis of your family member's condition. Symptoms of reversible dementia may be relieved if the root cause of the problem--which can include improper medication management, depression, vitamin deficiencies, or thyroid disorders--can be corrected. But even if you are given a diagnosis of Alzheimer's Disease, take heart. Families who inform themselves on the likely course of the disease should be better prepared to deal with it as it progresses.
It is increasingly clear that caregivers whose family members suffer any form of dementia are under particular pressures due to the long-term nature of the condition. Physically, a person with dementia may be unimpaired, but without the psychological controls to keep himself safe, he may require constant vigilance. Caregivers of dementia patients can face daily challenges communicating with their family members, managing their security, and helping them with the activities of daily living. As a result, many caregivers find themselves struggling to maintain their own physical and mental health.
Home care nurses involved in a dementia case have a unique opportunity to help family caregivers. Since they are already in the home and working with the family member, programs can be tailored to address the caregivers' needs as well. The Visiting Nurse Service of New York runs a behavioral health program that is geared toward the needs of family caregivers of dementia patients. The program involves a series of weekly home visits that focus on giving the caregiver dementia information and training and counseling tailored to their needs. According to Rose Madden-Baer, Vice President of Behavioral Health at VNSNY, "the program is predicated on the idea that direct interventions for the family caregiver will result in more consistent and safer care, and a better quality of life for the dementia patient."
Richard is a patient in the behavioral health program, and Anne has relied on the weekly visits by the nurses to learn strategies to support her role as caregiver. For example, Richard was greatly affected by "sundowning," a common phenomenon in which dementia patients' behavioral symptoms are triggered by the change from day to night. To learn more about "sundowning" please visit: http://blogs.vnsny.org/2010/04/16/you-are-my-sunshine/.
"Dusk became a very stressful time for me, because each day I feared how Richard would react. One day he would be extremely confused, another day extremely agitated," Anne confided. Richard's nurses taught Anne several coping strategies, which included closing the shades and turning on the lights every day at 3 pm to ease Richard's transition into night. "We teach the caregiver how to make adjustments in the cues that lead to difficult behavior," states Meg Sherlock, Manager of Behavioral Health at VNSNY. "By helping the caregiver manage these individual behaviors, we are giving them the tools to keep their family member stable and safe at home, and out of an institution."
Nurturing and maintaining meaningful aspects of the relationship is especially important for couples dealing with dementia. For Richard and Anne, food became an expression of love as their relationship grew over the years. "I used to love cooking and Richard was such an enthusiastic eater," says Anne. "Unfortunately, Richard's cognitive decline led to a loss of interest in food and eating, and this was very difficult for me to take." Meg Sherlock and her nursing staff came up with a solution, "we taught Anne to make finger foods that Richard could eat on the move," says Sherlock. "Once Anne adapted her expectations for the sit-down dinners she and Richard used to share, she started getting very creative. As a result, she is again finding satisfaction cooking for Richard--and he's able to enjoy her cooking as well. They've found a new way to share the love."
The dementia caregiver support program is broken into nine weekly lessons with the following objectives:
- Educate about the course of the disease, including ten early warning signs that require intervention;
- Special strategies for communicating with dementia patients;
- Discussing the role of medications;
- Minimizing and handling patient behaviors such as depression, apathy, anxiety or combativeness;
- Maintaining home safety and preventing falls;
- Recognizing the signs and symptoms of physical pain;
- Training on providing personal care, such as bathing, grooming, and toileting;
- Nutritional considerations; and
- Fostering social relationships and recreational activities.
The specific goals of the program are flexible, and change based on a caregiver's specific situation, "but over the course of the nine weeks, we work very hard to cover all the topics and customize the lessons to each family's needs," says Madden-Baer. For more information on the behavioral health program at VNSNY please contact (212) 760-3215.
*Prevalence of Dementia in the United States: The Aging, Demographics, and Memory Study, B.L. Plassman, K.M. Langa, G.G. Fisher, S.G. Heeringa, D.R. Weir, M.B. Ofstedal, J.R. Burke, M.D. Hurd, G.G. Potter, W.L. Rodgers, D.C. Steffens, R.J. Willis, R.B. Wallace, Neuroepidemiology 2007; 29:125-132.