“Caregivers, particularly women, really neglect their own health, getting to the doctor, managing nutrition, exercising. It’s not uncommon for women to have worsening health over the course of their caregiving, both from neglect and physical demands. ... Caregivers need to be able to vent and not be alone with their feelings and thoughts.”
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More than 16 million Americans are unpaid caregivers for someone with Alzheimer’s disease or dementia, according to the Alzheimer’s Association. Many of these caregivers are women, and they may become worn down by the stress and physical exhaustion of caregiving.
But it is essential for caregivers to find ways to both give and receive care, says Kauser Ahmed, PhD, a psychologist in the Simms/Mann-UCLA Center for Integrative Oncology. “A dementia diagnosis affects the entire family,” she says. “Caregivers, particular women, really neglect their own health, getting to the doctor, managing nutrition, exercising. It’s not uncommon for women to have worsening health over the course of their caregiving, both from neglect and physical demands.”
Caregivers also experience a range of spirit-depleting emotions, such as grief, guilt, anger and sadness, says Linda Ercoli, PhD, a psychologist in UCLA's Late-life Mood, Stress, and Wellness Research Program. A spouse may experience grief due to the loss of intimacy in the relationship. “Dementia affects personality and cognitive abilities. You can be caring for someone who has become a stranger to you,” she says. “Caregivers need to be able to vent and not be alone with their feelings and thoughts.”
Alzheimer’s disease often progresses slowly. Families benefit by discussing caregiving planning as soon as possible following the diagnosis, says Zaldy Tan, MD, medical director of the UCLA Alzheimer’s and Dementia Care Program. “Prepare for the level of care that will be needed,” he says. “Have those frank, but difficult, conversations now.”
Caregivers need help and support. However, many women choose to shoulder the burden alone or have difficulty asking for help. It can be hard to find and schedule help, Dr. Ahmed says. “Women often say, ‘It’s just easier to do it myself.’”
Moreover, dementia often affects a family’s social circle. Friends fall away and neighbors withdraw. “It’s hard for people to ask for help because, often, friends don’t understand what they’re going through unless they’ve gone through it before,” Dr. Ercoli explains.
Sometimes, however, help is just a phone call away. Dr. Ahmed advises caregivers to schedule a visit with their primary care provider. “Talking to your primary care doctor is an easy place to begin,” he says. “Acknowledging your physical and psychological burden is important information that your primary care provider would value knowing. They can encourage a connection to other resources and reinforce the idea of self-care.”
Most communities have non-profit organizations for families dealing with dementia that offer free advice and education. Support groups for dementia caregivers are common. Attending a support group even once or twice a month can be valuable, Dr. Ercoli says. “Caregivers get to air their feelings, and they find out they are not alone,” she says of support groups. “Other people have good ideas to share about various situations.”
UCLA offers multidisciplinary services for patients and caregivers as well, Dr. Tan says. They include outpatient programs, education and support groups. In the UCLA Alzheimer’s and Dementia Care Program, patients with dementia and their caregivers are paired with a dementia care manager, who is a licensed geriatric nurse practitioner, to make sure all their needs are fulfilled.
“We have people involved with dementia at every stage, from primary care physicians to world-class services in geriatrics, neurology and psychiatry — the three medical specialties with expertise in the different aspects of the disease,” Dr. Tan says.