Supporting Dementia Caregivers

The University of Michigan and the AARP recently conducted a study of people who provide care for family members or friends with Alzheimer’s disease and other types of dementia. Among their findings:

• 78 percent of these caregivers say caregiving is stressful.
• 66 percent say their duties interfere with their life and work.
• 27 percent say they don’t have time to take care of their own health.

The news wasn’t all bleak: 85 percent of the caregivers reported that their role was rewarding. And the caregivers said their experiences made them more likely to plan ahead for their own senior years.

Dementia caregivers also face great financial challenges. According to Brown University researchers, the total average cost to care for a person with dementia is more than $321,000. Medicare and Medicaid cover some of this, but 70 percent of the cost falls on the family. Head researcher Prof. Eric Jutkowitz hopes policymakers will use this information “to consider the enormous informal burden on families.”

Helping caregivers also helps their loved ones

By supporting family caregivers, we’re also helping the people they care for. A study from the University of California, Berkeley reported that when caregivers are suffering from stress, anxiety and depression, their loved one’s health suffers, to such a degree that their life might even be shortened.

Study author Prof. Robert Levenson described it thus: “Our finding of the strong relationship between patient survival and caregiver mental health underscores the profound intertwining of the lives and well-being of caregivers and patients as they engage in one of life’s most challenging and intimate relationships.”

The research team noted that when caregivers are in distress, it can “weaken patients’ immune systems by compromising social bonds between the caregiver and patient, or transmit negative emotions directly to patients through a phenomenon known as emotion contagion, in which one person in a relationship absorbs the emotional responses of the other.”

What do caregivers need and how can our society help? Here are some pressing needs:

Advocacy. We should all advocate for Alzheimer’s research, care, and greater awareness. Find more information on the Alzheimer’s Association website (www.alz.org).

Education. Caregivers struggle to know how best to care for their loved one and to deal with challenging behavior changes. So often, knowing more about the effects of the disease can help families better communicate with and support their loved one. Gerontologists and public health experts call for increased caregiver training, including online support and teleconferencing.

Some “me time.” A study from the American Psychosomatic Society called for increased respite time for caregivers—and urged them to spend that time doing things they truly enjoy. The team found that caregivers who could take part in pleasant pastimes had lower blood pressure and better all-around health. Of course, exercise should be on their “to do” list.

Emotional support. Many caregivers say distress about the changes in their loved one’s behavior and their relationship with the person is the most difficult part of their role. Counseling can help. Support groups—in person and these days, online—also are a real lifeline for caregivers. Who better to offer great advice, a sympathetic ear and even a dose of humor than others who are living the same experience?

If you have a friend or family member who is providing care for a loved one with dementia, how can you help?

The first step is to ask! Visit often, and remember you are visiting two people. Take the time to relate to your friend who has dementia; the caregiver will be able to give you some communication tips. And ask how the caregiver is doing. If they are overwhelmed and you are a good researcher, help them access resources, such as support groups, public health services, and memory care services in the community.

This issue will become ever more important. An earlier University of Michigan study showed that although the percentage of seniors who have dementia is actually dropping, our aging population will still mean many more cases … and many more caregivers. “We need to understand the challenges, benefits and barriers that dementia caregivers face, because of the important role they play for their loved ones, in their families, and in our society and economy,” said researcher Erica Solway, Ph.D. “Better support to these family caregivers is needed, which health care providers, family, friends, social service organizations, clergy and policymakers can all help to address.”