Life

Alzheimer's and dementia caregivers: what they need to know

Peggy Lavender, 63, of Brookhaven, Georgia, knew her life would change when her husband, Jim, 66, was diagnosed with Alzheimer’s five years ago, but she never expected it to be this challenging.

Following Jim’s diagnosis in 2014, Lavender managed to balance her career as a fifth-grade teacher with caregiving responsibilities, but as her husband’s caregiving needs increased, so, too, did her stress. This past May, Lavender retired, earlier than she had planned to become a full-time caregiver for Jim.

“I survived breast cancer and my son’s bout with lymphoma, but becoming a full-time caregiver for my husband is the hardest thing I’ve ever done,” Lavender said. “Every day there is loss. It’s demanding physically and emotionally I feel very alone.”

Lavender, however, is not alone. Today, more than 16 million Americans are providing unpaid care for people with Alzheimer’s and other dementias. An Alzheimer’s Association report shows these caregivers shoulder more caregiving responsibilities than other caregivers, helping with a wider variety of activities and spending more hours per week providing care.

“It’s the totality of caregiving that really gets to you. It’s everything,” Lavender said. “I know it sounds selfish, but I feel like I have no time for me.”

This high burden of care over a longer period can take a significant mental and physical toll on dementia caregivers. Nearly half of dementia caregivers say providing care is emotionally stressful, and 30 percent say that providing care often involves physical strain. Dementia caregivers are nearly twice as likely to say that their health has gotten worse as a result of their caregiving responsibilities and 35 percent of report their health has declined as a result of caregiving.

Like Lavender, the majority of Alzheimer’s caregivers are women (58 percent), but gender differences provide only a small glimpse of the evolving demographics of today’s Alzheimer’s caregiver. Increasingly, dementia caregivers are juggling multiple demands, including work, family and geographic separation.

“The age and life circumstances of caregivers are important factors that must be taken into consideration,” said Ruth Drew, director, information and support services, Alzheimer’s Association. “There are only so many hours in a day, so caregivers need to assess competing responsibilities and decide what they can realistically do and where help is needed.”

To help caregivers balance competing priorities while maintaining their overall health and well-being, the Alzheimer’s Association offers these tips:

• Take Care of Yourself — It can be easy to neglect your health while caring for others, but making sure you are healthy can help you be a better caregiver. Try to eat well, exercise and get plenty of rest. Carving out just 30 minutes a day for yourself to do something you enjoy can go a long way to reducing caregiver stress.

• Maintain Good Communication — Help other family members understand the demands you’re facing and enlist their help and support. A 2017 Alzheimer’s Association survey found that 91 percent of Americans believe it “takes a village” to care for a person living with Alzheimer’s, but many caregivers fail to ask for help.

• Seek Support — Organize friends and family who want to help provide care and support. Access local support groups or online communities to connect with other caregivers. If stress becomes overwhelming, seek professional help.

• Know You’re Doing Your Best — It’s normal to lose patience or feel like your care may fall short sometimes. You’re doing the best you can. For support and encouragement, consider joining an online or in-person support group.

Lavender said love and support from her two sons, support group friends and her strong faith have helped sustain her during a difficult journey. Her advice to other caregivers: reach out and ask for help.

“Too many caregivers are hesitant to ask for help or they just don’t know how,” she said. “But as a caregiver you need guidance to better help the person you’re caring for, but also emotional support for everything you are going through.”

To learn more about Alzheimer’s disease and to find resources for caregivers, families and people living with the disease, visit www.alz.org, the website of the Alzheimer’s Association.