A new study suggests that caregivers need and want to access support resources and that perhaps the experience of caregiving has made them consider the possibility of their own future needs. And there is no doubt that the current number and expected increase in the foreseeable future of individuals with dementia and Alzheimer’s disease will necessitate it.
According to the Alzheimer's Association, "the number of Americans living with Alzheimer's disease is growing — and growing fast. An estimated 5.5 million Americans of all ages have Alzheimer's disease."
Of those Americans living with Alzheimer's dementia in 2017:
- One in 10 people age 65 and older (10 percent) has Alzheimer's dementia.
- Almost two-thirds of Americans with Alzheimer's are women.
- African-Americans are about twice as likely to have Alzheimer's or other dementias as older whites.
- Hispanics are about one and one-half times as likely to have Alzheimer's or other dementias as older whites.
"Because of the increasing number of people age 65 and older in the United States, particularly the oldest-old, the number of new cases of Alzheimer's and other dementias is projected to soar," the Alzheimer's Association states at alz.org. "Today, someone in the United States develops Alzheimer's dementia every 66 seconds. By mid-century, someone in the United States will develop the disease every 33 seconds."
Organizations such as AARP are developing and deploying more local and online resources for caregivers every day, and for good reason. “The rise in the number of people with dementia has led to the creation of many resources for caregivers that can provide vital support,” said Erica Solway, Ph.D., associate poll director and University of Michigan Institute for Healthcare Policy and Innovation (IHPI) senior project manager. “These range from self-help tools and classes for learning new skills that may be needed in the role, to support groups and respite care that can help give caregivers a break from their duties.”
She added that health care providers who tend to dementia patients’ medical needs could be a key gateway to specific local and electronic resources for their patients’ caregivers. “Health care providers should routinely ask patients if they serve as a caregiver to a loved one, so they can identify and address needs and concerns during the caregiver’s own appointments,” she said.
The “November 2017 Report: Dementia Caregivers - Juggling, Delaying, and Looking Forward” poll was conducted by the University of Michigan IHPI and sponsored by AARP and Michigan Medicine, the University of Michigan’s academic medical center in Ann Arbor, Michigan. The poll results are based on answers from those who identified themselves as dementia caregivers among a nationally representative sample of 2,131 people ages 50 to 80. It focused on unpaid dementia caregivers, family, and friends who help people with memory problems manage health issues and provide personal care.
Two-thirds of dementia caregivers polled said that their caregiving duties had interfered with work, family time or even getting to the doctor for their own health problems. Some 66 percent say their duties interfere with their own lives and jobs – including 27 percent who said they had neglected something related to their own health because of caregiving’s demands on their time. In fact, one in five caregivers rated their physical health as fair or poor, and 7% rated their mental health as fair or poor. One in seven believe their physical or mental health are not good enough to provide care to the care recipient.
Poll respondents answered a wide range of questions online which were then written, and data interpreted and compiled, by the IHPI team. Laptops and Internet access were provided to poll respondents who did not already have them.
Solway stressed that these are people who are unpaid, unsung and for the most part spending many hours a day helping someone who may not even recognize them anymore.
She said the new poll gives a glimpse into the lives of the spouses, grown children and other family members and friends who act as caregivers for millions of Americans with dementia.
Overall, 7% of poll respondents identified as a caregiver of a person age 65 or older with dementia, Alzheimer’s disease, or another cognitive impairment. Solway said caregivers are most likely to be women under 65 years of age and caring for a parent. To be exact, three in five or 60% provided care to a parent, 19% to a spouse, and 21% to another relative, friend, or neighbor. And he majority of care recipients - or some 70% - have another health condition and/or disability in addition to memory problems, the caregivers reported.
Nearly half of caregivers responding had other jobs in addition to being caregivers. They took care of medical needs, household tasks, and other activities to keep their loved one safe. One-quarter said the person they were caring for couldn’t be left alone for more than an hour.
While some 78 percent of respondents said that caregiving is stressful, even more said it was rewarding, however. In fact, 85 percent of family caregivers called caregiving a rewarding experience. The fact that 45 percent rated it as “very rewarding,” compared to 19 percent who called it “very stressful” should speak to the positive side of caregiving, Solway said. It should be noted, however, that of the 40 percent of those who called dementia caregiving very stressful also said it was not rewarding.
Another potential benefit that Solway realized was the extent to which a younger generation may learn from the experience and to plan ahead. Ninety-one percent of the caregivers responding said they had thought about their own future care needs because of their experience taking care of someone with dementia.
“The experience of caregiving may actually help encourage the kind of planning that many Americans haven’t attended to but should," Solway said.
Respondents to this poll said they believe that being a caregiver has made them think about their future needs. “As they experience the realities of daily life for a person living with dementia, caregivers may be better prepared than others to consider and plan for their own wishes as they age,” she said. “Caregivers may think about and take steps toward completing advance directives, designating power of attorney, or purchasing long-term care insurance, and may be more likely to engage in conversations with those close to them about their hopes for the future.”
The study found that only 1 in 4 caregivers reported that they had taken advantage of resources designed to help them, but a full 41 percent of those who didn’t expressed interest in such support.
“Caregiving is a complex experience that affects people across every demographic,” said Alison Bryant, Ph.D., senior vice president of research for AARP. “Providing family caregivers with resources to support them in balancing work and life pressures and reducing their stress is critical not only for them but also for those that might care for them in the future.”
Solway said her team hopes the findings can form the basis for further exploration of caregiving issues specific to dementia. “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,” she said. “We can see from this report that 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.”
Most communities offer resources through Area Agencies on Aging, the Alzheimer’s Association, other social service agencies, and churches or faith groups. But caregivers may not be able to use them because of time constraints or flexibility in their schedules, cost, logistical challenges, other priorities, or simply lack of awareness about the resources. “Recognizing and understanding the barriers to accessing resources is key to improving support for caregivers,” Solway said. She hopes the information her team has assembled will change that.
“The findings in this report suggest that there are opportunities to provide better support to dementia caregivers. Health care providers, other family members and friends, clergy and policymakers can be an integral part of helping meet caregivers’ needs,” she said, adding that, “Health care providers should ask about caregiving responsibilities as a routine part of clinical care. Family and friends can offer to provide additional help when caregivers need to take time for their own health and well-being. As the population ages and the number of available caregivers is unlikely to keep pace, it is critically important to ensure that resources to support dementia caregivers are readily available and accessible.”
