For Alzheimer's caregivers, knowledge is power
(BPT) - Michael Snowden was just 12 and his sister 16 when their mother began to exhibit symptoms of Alzheimer's disease. Although they didn't receive a definitive diagnosis until seven years later, the need to assume caregiving roles while still in their teens profoundly affected their lives.
"Not many people understood the disease or how to take care of her," Michael says. "We did not really understand the disease ourselves after the diagnosis. Eventually, my sister and I had to take over the caregiving responsibilities. Our lives quickly changed."
The number of Americans with Alzheimer's is set to triple over the next 35 years.
"Unless something is done to change its course, the Alzheimer's crisis will continue impacting not only the millions of Americans currently living with the disease, but their caregivers, friends and family," says Ruth Drew, director of family and information services for the Alzheimer's Association. "Caregiving can become anyone's reality. As the prevalence of the disease increases, more people from all walks of life, economic strata and ages will find themselves helping to support someone with Alzheimer's in the coming years."
Approximately two-thirds of caregivers are adult women - typically wives or daughters of people with Alzheimer's. A growing number of teenagers and men, however, are finding themselves in a full-time caregiving role.
"Facing early-onset Alzheimer's when my wife, Chris, was in her mid-40s was devastating," recalls Mark Donham, whose wife passed away from Alzheimer's in 2011 at the age of 54. "Since we did not have extended family nearby, I decided that I would quit my job and care for Chris full time. We had to live on savings, knowing our financial future would be difficult."
In addition to financial burdens, Alzheimer's caregivers can become so focused on their role that they neglect their own physical, mental, financial and emotional well-being. In fact, according to the Alzheimer's Association 2016 Alzheimer's Disease Facts and Figures report, 20 percent of care contributors sacrificed their own medical care by cutting back on doctor visits.
"My biggest challenge was trying to figure out 'how to take care of yourself' as your loved one declines," Donham says. For caregivers, he advises, "Be sure to take active steps to take care of yourself so that you can be the best possible caregiver for your loved one."
With more people becoming primary caregivers, the resources provided by the Alzheimer's Association are more critical than ever. Across the country, Alzheimer's Association chapters provide face-to-face services such as support groups and educational sessions within communities.
A professionally staffed 24/7 Helpline (800-272-3900) provides information and advice to more than 300,000 callers each year. Recognizing the growing diversity of Alzheimer's caregivers, the Helpline also provides translation services in more than 200 languages. The Alzheimer's and Dementia Caregiver Center, part of alz.org, offers a wealth of caregiving tips and resources at every stage of the disease. Online message boards and forums allow caregivers to connect with others facing similar challenges to share information, resources and find support at any time of day or night.
Support and information can be empowering, the Snowdens and Donham say.
"Understand the disease," Shanelle Snowden says. "Once you are able to educate yourself on the disease, you will be able to cope better and you will be able to take care of your loved one better."
Donham learned from others in the same situation. "Early on in Chris' disease, I developed coping strategies," Donham says. "I came to accept the disease, got connected to a support group, and educated myself as to the course of the disease and what help I would need to make sure Chris had the best care possible."
For people facing the task of becoming an Alzheimer's caregiver, Donham and Snowden offer some advice: Act early, before symptoms become severe.
"Face the diagnosis, and use the earliest times to get legal and financial matters in order," Donham says. "Connect with a support group so that you are not alone on the journey."
The Alzheimer's Navigator helps those facing the disease to determine their needs and develop an action plan. In addition to planning for the future, knowing the diagnosis early also enables the person with Alzheimer's to get the maximum benefit from available treatments and participate in clinical studies that help advance research. Alzheimer's Association TrialMatch connects individuals with Alzheimer's, caregivers, healthy volunteers and physicians with current studies.
"Cherish each and every moment with your loved one," Michael Snowden says. "Create moments of joy by doing the small things like sitting and watching TV together, listening to their favorite song or even just dancing. It will be something you'll always remember about that person, and not the negative things that come with the disease. Other people out there are going through the same thing. Remember, this was not a curse put upon you or your loved one; it is something that is making you a stronger person."
To learn more about Alzheimer's disease and resources for caregivers, visit www.alz.org.