Despite the immense and ever-growing need for physical, financial and emotional relief for family caregivers, research indicates the nation’s estimated 40 million caregivers still find joy in caring for their loved ones. But they also need help like never before.
“I’d like to point out that despite the challenges, there’s beauty in the fact that people find joy in caregiving,” said Eve Gelb, senior vice president of HealthCare Services for Senior Care Action Network (SCAN), one of the largest not-for-profit Medicare advantage health maintenance organizations in the United States. “We need to find ways to support caregivers so they can sustain their own health and prioritize their own needs while they care for their loved ones. Through education about the resources available, we’re getting closer.”
Gelb’s assessment reflects the Congressional passage this month and signing January 23 by President Donald Trump, of the Recognize, Assist, Include, Support, and Engage (RAISE) Family Caregivers Act. The bi-partisan law directs the Secretary of Health and Human Services to develop and sustain a national strategy to recognize and support family caregivers in the United States. It also establishes an advisory body that will bring together stakeholders from the private and public sectors to make recommendations that communities, providers, government and others may take to help caregivers.
The SCAN survey found that, from the perspectives of physical and emotional health, the implications of caregiving can be equally worrisome. Results show that, of senior caregivers:
- 82% have difficulty saying “no” to the job.
- 54% feel guilty about taking a break from their caregiving tasks to make time for themselves.
- 29% spend 40 hours a week or more caring for someone.
- 47% are concerned about the physical strains that comes with caregiving and 44% are concerned about the emotional strains.
- 44% are not confident that the person they’re a caregiver for would be able to find someone else to take care of them.
- 34% have cut back on their own discretionary spending.
- 20% have used personal savings to provide care.
- 8% have accrued credit card debt to provide care.
- 5% have asked for donations or financial support from friends or family.
- 2% have taken out a loan to provide care.
And yet despite all of the statistics, some 86 percent of respondents indicated that their responsibility is a rewarding experience.
“SCAN’s survey underscores that while there are emotional and practical challenges, caregiving can be rewarding and that caregivers largely are devoted to the person they are caring for,” Gelb said. “Caregivers should be living their best life too, however we are seeing that they end up sacrificing their own wellbeing.”
Gelb said that because caregivers who are seniors are not confident that the person they’re a caregiver for would be able to find someone else to take care of them, it “implies that caregivers are not aware of the resources available to care recipients and the services that can be purchased or found through community resources. In addition, guilt and sense of purpose play a large role in not wanting to give up the caregiving role. Many of the challenges senior caregivers face can be alleviated through their community. Nobody faults a working mother for finding a babysitter for their child, yet for some reason, this sentiment is not extended to caregivers who need to find support. This survey cements that the way society thinks about caregiving for seniors needs to evolve.”
This is where the RAISE Family Caregivers Act comes in, though Gelb admits they have their work cut out for them. “RAISE is a step in the right direction for caregivers, and we know certain states have expanded family leave acts that help bring caregiving to the forefront, however significant strides still need to be made,” Gelb said. “This topic is also especially relevant as our society has becoming increasingly mobile. There is less encouragement for adult children to stay near their families to help take care of them as they age, leaving parents and older relatives to care for one another.”
Gelb went on to say that it was specifically those senior caregivers that SCAN had in mind when commissioning the survey. “While there is quite a bit of information available about the sandwich generation, this survey was conducted to get a better idea of the scope of this issue as it relates to caregivers who are seniors. As our society ages we will see the number of seniors caring for other seniors increase. In light of their dedication to their job, we cannot let senior caregivers continue to put their own health and quality of life at risk, as they deserve better and their loved one needs them to be as healthy as possible, too. It’s a double impact—the health of the caregiver and the health of those they are caring for.”
Then there are the financial obstacles. “Outside of the emotional and physical tolls, there are also financial burdens,” Gelb said. “Attention also must be drawn to the fact that, in a situation fraught with emotional and practical challenges, caregivers often don’t have the time, energy or resources needed to deal with the challenges proactively. Sadly by the time they realize they need it, it’s too late to get financial protection (such as long-term care insurance). Typically long-term care insurance should be purchased in your 30s and 40s, which means financial planning is an incredibly important aspect as we look to prepare for a future of increased senior caregiving.”
Gelb suggests senior caregivers look into the following resources that may already be available to them:
- Local communities services such as those offered through local health associations, churches and synagogues or other organizations.
- A geriatric care manager can conduct a professional assessment of you and your loved one to identify need. They can then connect the caregiver and recipient to local agencies to provide services and resources. “Something like getting nutritionally balanced meals delivered can lift a weight off of a caregiver’s shoulders,” Gelb said. Often Area Agencies on Aging can provide meals and other services.
- Respite care provided in the home or in the community can give caregivers time to care for themselves whether for exercise, doctor appointments or important mental and physical health breaks.
In a recent blog post, “A Study Of Family Caregiver Burden And The Imperative Of Practice Change To Address Family Caregivers’ Unmet Needs,” Health Affairs highlights the dementia caregivers’ perspective on the challenges they face, and identifies resources caregivers use for support.
The Health Affairs website notes that the journal reaches a broad audience that includes: government and health industry leaders; health care advocates; scholars of health, health care and health policy; and others concerned with health and health care issues in the United States and worldwide. It’s “articles are cited by U.S. administration officials, U.S. lawmakers and ministry of health leaders around the globe. Members of Congress from both sides of the aisle reference Health Affairs in drafting legislation.”
Health Affairs reports that an estimated 15 million family caregivers in the US provide unpaid care for someone with dementia. “Despite the fact that the physical and emotional toll on family caregivers is well-documented, little has been done to integrate caregiver support into the routine care of dementia patients,” Health Affairs reports. “Poor caregiver well-being may not only matter for the patient and caregiver, but for health systems’ bottom line as well. Caregiver burden and fatigue exacerbate the dementia patients’ high hospital and emergency department use. In fact, over five years, the average cost of care for a person with dementia was found to be more than 80 percent higher than the cost of care for a patient with heart disease or cancer. As the shift to value-based payment structures accelerates, understanding the root of these high costs and adopting strategies to mitigate them must become a priority for risk-bearing health care entities hoping to meet quality care standards and remain financially viable.”
To this end, the Center to Advance Palliative Care(CAPC) and the Gary and Mary West Health Institute (WHI) are developing courses and resources that assist the patient’s health care providers in supporting and educating caregivers to help them care for their loved ones with dementia. According to Health Affairs, the training will include how health systems can identify people with memory loss, how health care providers can assess and alleviate caregiver burden and how health systems and providers can operationalize best practices in dementia care.
To identify knowledge gaps and challenges of caregivers of people with dementia, the CAPC and the WHI conducted four in-person focus groups, provided an online bulletin board and ran a national survey of 500 caregivers of those with dementia through the national polling firm Public Opinion Strategies (POS).
Participants were asked to identify their biggest caregiving challenges and the most challenging behaviors exhibited by their loved one. The results showed that emotional burden and stress rank at the top of the list of challenges. Dementia caregivers ranked agitation or aggression, repetitive speech or actions, and wandering or restlessness among the most challenging behaviors exhibited by their loved ones, Health Affairsreported. “These responses, indicate the need for providers to both train caregivers in how to interpret and manage these behaviors and in how to recognize the underlying causes of these behaviors. Person-centered, comfort-focused models of dementia care—such as the Comfort Matters approach, which focuses on interpreting behaviors of patients with dementia as communication and creating personal care plans—offer frameworks for how providers, such as nurses, doctors, certified nursing assistants, social workers, spiritual care providers and therapists can address behavioral challenges.”
Findings of the study also indicate that caregivers may be reluctant to share the difficult aspects of caring for their loved one with outsiders, including their health care providers, even though participants also reported they would choose their health care providers as their preferred source of information.
In addition, “Despite the fact that many high-quality resources for caregivers exist, including ones offered by the Alzheimer’s Association, Family Caregiver Alliance, and AARP, more than half (55%) of caregivers in the survey reported that they do not use online tools to help them care for their loved one,” Health Affairs reported. “The fact that the materials caregivers request already exist online, while a majority don’t use them, indicates a disconnect between how caregivers prefer to receive information and the resources currently available.”
The following includes information (provided by Health Affairs) about resources available that health systems and clinicians can use to provide support to family caregivers in their clinical settings:
- In January 2017, Medicare approved a new Medicare Current Procedural Terminology code for cognitive impairment assessment and care planning, which reimburses providers for time spent creating a comprehensive care plan that includes cognitive and functional assessment of the patient as well as the caregiver.
- The National Institute on Aging offers numerous resources for health professionals on Alzheimer’s and dementia assessment, diagnosis, and management.
- Clinicians can use evidence-based assessment tools such as the Zarit Burden Interview to identify caregiver burden and assist in providing appropriate referrals to community organizations such as the Alzheimer’s Association, Area Agencies on Aging, and Family Caregiver Alliance that provide online training, in-person support groups, respite, and 24/7 phone assistance among other resources.
- States also have training resources specific to their population and payer’s needs. For example, Alzheimer’s of Greater Los Angeles offers dementia-specific care management training to help insurers in California meet state requirements for care managers and fill gaps in their dementia-capable workforce.
- The Joint Commission offers Disease-Specific Care Certification for programs providing clinical care in both Alzheimer’s disease and dementia. Obtaining certification and adopting standardized best practices would ensure the clinical team has the proper training and strategic mission support to best serve patients with dementia and their caregivers.