swhr_icon-2-solidThe post below originally appeared on HuffPost’s Living Healthy blog on July 15.

When most of us think of Alzheimer’s disease, our first thought isn’t usually of the quiet caregiver alongside the patient, devoting their time to helping someone living with the disease. But caring for someone with Alzheimer’s disease is often a full-time job, taking its toll on the caregiver.

According to AARP and the National Alliance for Caregiving, the “typical” family caregiver is a 49-year-old woman who takes care of a relative. Nearly 25 percent of America’s caregivers are millennials (adults aged 18 to 34) and are more likely to be female than male. In fact, 66 percent of all caregivers are women, and female caregivers devote as much as 50 percent more time providing care than their male counterparts. Caregivers older than 75 years tend to be the sole support system for their loved one, providing care without any outside help.

Nearly half of caregivers who provide 21 or more hours of care each week report high emotional stress, and with an average household income of $45,700, caregivers feel not only emotional strain, but also immense financial strain, as the cost of caregiving is at least $5,000 annually. That financial strain comes from both the actual cost of caregiving – prescriptions, supplies, accommodations — as well as lost wages due to reduced work hours, time out of the workforce, family leave, or early retirement. Female caregivers are 2.5 times more likely to live in poverty than non-caregivers and are five times more likely to rely on Supplemental Security Income.

“The general public needs to be aware of the tremendous toll caring for persons with dementia has on physical and emotional well-being,” said Dr. Darby Morhardt, Research Associate Professor in Cognitive Neurology and Alzheimer’s Disease Center at Northwestern University’s Feinberg School of Medicine.

The toll caregiving can take on the caregiver is significant. “For many long-term chronic diseases — from diabetes, depression and stroke to Parkinson and Alzheimer’s – memory issues like dementia complicate care and, over time, jeopardize the caregiver’s health,” said Meryl Comer, award-winning journalist, author, and President and CEO of Geoffrey Beene Foundation Alzheimer’s Initiative, a 20-year caregiver herself.

Middle-aged or older women who provide care for their spouse are six times more likely to suffer from depression and anxiety than women with no caregiving responsibilities. Other physical tolls caregiving can take include high blood pressure and increased risk of developing hypertension; lower perceived health status; poorer immune function; slower wound healing; and even an increased risk of death.

As if physical, emotional, and financial strains weren’t enough, an added challenge is the stigma of caregiving’s role reversal. “Caregivers are the keeper of the secrets. Many are reluctant to self-identify because they have to come to terms with being a ‘parent to their parents’ or acknowledge the total dependence of a spouse,” Comer said.

Many family caregivers do not want to call themselves “caregivers,” said Dr. Mary Mittelman, Research Professor in the Department of Psychiatry at NYU Medical School. “I wish the public would be kinder to people with disabilities and that the stigma connected with dementia would be reduced. Then perhaps people with dementia would be more likely to be diagnosed and family caregivers would be more willing to talk about the illness and benefit from support of their family members and friends and the evidence-based psychosocial interventions that could help them.”

The Society for Women’s Health Research (SWHR®) has long advocated for more attention to the caregiving aspect of this disease, beginning with the organization’s 2011 roundtable exploring sex and gender differences in Alzheimer’s disease. In May 2015, SWHR held its second interdisciplinary roundtable focusing on where the burden of Alzheimer’s disease falls, what sex and gender differences have been found, and what crucial questions remain to be answered.

“Ultimately, easing the disease burden is just as much about the caregiver as it is about the Alzheimer’s patient,” said Dr. Morhardt, who was in attendance at the May 2015 roundtable.

So, what can be done? To ease the burden of caregiving, take action now:

  • Advocate for better distribution of funding to alleviate the financial concerns of caregiving
  • Promote more equitable distribution of funds among pharmacological and non-pharmacological interventions for Alzheimer’s disease
  • Support tailored and culturally specific interventions for the person with Alzheimer’s disease and their family

The Society for Women’s Health Research (SWHR®) is the thought-leader in promoting discussion on sex and gender differences in Alzheimer’s disease. Click here to learn more.

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