It’s not easy to watch a loved one grow old, and for the families of people with dementia, it’s heartbreaking. It’s hard to know what to say and do as a relative becomes increasingly forgetful and unable to perform daily tasks without help. Fortunately, caregivers and loved ones are not alone: In 2008, there were an estimated 9.9 million caregivers providing 8.5 billion hours of care to Alzheimer’s patients, according to the Alzheimer’s Association.
“I think the most important tool for anyone dealing with Alzheimer’s or dementia is an Alzheimer’s support group,” says Rhonda Uhlenbrock, administrator of Garden View Care Center in Chesterfield. The Alzheimer’s Association sponsors support groups throughout the metro area for caregivers and for people who have early-stage dementia. Online support and a telephone help line are also available (alz.org/stl).
Uhlenbrock describes the caregivers’ support group that she facilitates: “This is a group of family members from the community who get together and talk about their frustrations and guilt about feeling frustrated. I honestly believe—more than anything else—this is the most useful tool for caregivers.”
Talking with your loved one’s primary-care physician after a diagnosis of dementia also can be helpful. Many physicians have information about local resources and can refer families to social services agencies that provide eldercare, financial and legal assistance as the family prepares a long-term care plan.
Spending time with someone who has dementia can be increasingly challenging, but just being there can bring a real moment of joy to a loved one’s day, says Tracy Cecil, administrator of Parc Provence. “Think what they would like to do and always try to engage the senses. For example, get out the photo albums, or make sure the gardening tools are ready. But also, be prepared to change up in a moment’s notice. Those with dementia will experience a shortened attention span, and therefore, after even five to 15 minutes, they may be ready to move on to something else.”
Maintaining a sense of humor and putting aside preconceived notions about the individual’s behavior is important. “Stay calm, as dementia folks respond well to peace and orderliness,” Cecil says. “Also, understand that this individual is in the throws of ‘retrogenesis.’ This means that as they move through later stages of life, they may experience very childlike behaviors, their thought process is not linear and organized, and their abilities will be comparable to a child of 8, then 6, then even toddler age. If you can respectfully employ some of the same techniques that seemed to work with your children, then you should experience some degree of success.”
Uhlenbrock uses the example of blowing bubbles outdoors on a nice day. “They live moment by moment,” she says. “We blow bubbles with them, and they love it! Who wouldn’t? They get to do things that you and I want to do, but they don’t have those social inhibitions in the way.”
Cecil also emphasizes that caregivers must take care of themselves. Getting adequate rest, eating right, exercising, meditating or relaxing with a hobby can help reduce stress and make you more effective in caring for others. “Find your sense of humor, have a backup plan, and try new things to see what works best, but don’t stop loving or interacting with them,” she says. “Trust me, their perceptive skills stay strong for a long time after the memory fades, and they will sense your love and understand that you are trying.”