The United Hospital Fund and AARP Public Policy Institute issued a report today with compelling new evidence that family caregivers who provide complex chronic care to people who also have cognitive and behavioral health conditions face particularly demanding challenges, including high levels of self-reported depression. As a result, a majority of them (61 percent) reported feeling stress “sometimes to always,” between their caregiving responsibilities and trying to meet other work or family obligations.
Adding to the challenge, people with cognitive and behavioral conditions (collectively termed in the report “challenging behaviors”) were generally sicker than other people requiring caregiving. These persons needing care often had chronic physical health diagnoses—including cardiac disease, stroke/hypertension, musculoskeletal problems (such as arthritis or osteoporosis), and diabetes—at higher rates than those without cognitive and behavioral conditions. Further illustrating the complexity, family caregivers of people with challenging behaviors often met with resistance from the person they were trying to help. Caregivers noted that “more cooperation from their family member” would make one key medical/nursing task—managing medications—easier.
Family Caregivers Providing Complex Chronic Care to People with Cognitive and Behavioral Health Conditions, a publication in the “Insight on the Issues” series, summarizes the new findings. They are drawn from additional analysis of data based on a December 2011 national survey of 1,677 family caregivers, 22 percent of whom were caring for someone with one or more challenging behaviors. Earlier findings were published in the groundbreaking Public Policy Institute/United Hospital Fund report Home Alone: Family Caregivers Providing Complex Chronic Care and in earlier publications in the “Insight on the Issues” series, including Employed Family Caregivers Providing Complex Chronic Care and Family Caregivers Providing Complex Chronic Care to Their Spouses.
The report concludes, “All caregivers need training and support; caregivers who are responsible for people with challenging behaviors are among those most in need of assistance.”
“Take a hard look at this profile of today’s overstretched and overstressed caregiver for someone with cognitive or behavioral issues,” said Susan Reinhard, AARP’s Senior Vice President for Public Policy. “This is the face of caregiving’s future unless we improve long-term services and support for family caregivers,” she said, pointing to the expected surge in the incidence of Alzheimer’s disease and the projected drop by more than half [TCV Update 4/29/2024: the AARP URL is no longer available] in the ratio of potential caregivers to those likely to need care. [TCV Update 6/27/2018: Alzheimer’s Association URL is no longer available – using link to web archive.]
Focused caregiver assessments were one of six recommendations outlined in the report. The others were better integration of behavioral and physical health programs, efforts to set up respite and adult day care programs for family caregivers, training of family caregivers to better understand and respond to challenging behaviors, better training of health care providers to work more effectively with family caregivers, and revisions to most support and training materials for family caregivers to reflect care management of the whole person, rather than just the specific condition.
“Caring for a family member is hard enough when the family member is on the same page,” said co-author Carol Levine, Director of the Families and Health Care Project for United Hospital Fund. “But when that family member has a cognitive impairment, like Alzheimer’s, or a behavioral issue, such as depression—things that can interfere with daily life as well as decision-making—the burden on the caregiver is multiplied. And currently, our health care system often doesn’t provide the kind of support that can make a difference.”
Sarah Samis, former Senior Health Policy Analyst at United Hospital Fund, was the third author of the new publication, along with Susan C. Reinhard and Carol Levine.
There are more than 42 million unpaid family caregivers in the United States.
Family Caregivers Providing Complex Chronic Care to People with Cognitive and Behavioral Health Conditions [TCV Update 4/29/2024: the AARP URL is no longer available] was produced with support from the John A. Hartford Foundation.
The earlier report is also available here: Home Alone: Family Caregivers Providing Complex Chronic Care. [1/19/2019 TCV UPDATE: Link returns a 404 Not Found error]
AARP is a nonprofit, nonpartisan organization, with a membership of more than 37 million, that helps people 50+ have independence, choice and control in ways that are beneficial to them and society as a whole. The AARP Foundation is an affiliated charity that provides security, protection, and empowerment to older persons in need with support from thousands of volunteers, donors, and sponsors.
Archive Photo: Courtesy Judy Fox
I read this article with hope there would be some guidance or tips. We know it’s more stressful. What to do about it is the question!!!
Sorry — I cared for both of my parents and though they had different issues, everything was stressful. The worst part was I was in it alone. My sibling provided funding for Long Term Care insurance but beyond that didn’t help in their care until the last couple months of Mom’s life. That meant the responsibility — the emotional wear and drain were on me.
Stress doesn’t really describe the situation. It’s more like an ongoing responsibility that never gives you a break — and you are so in the moment that a fleeting emotional release is always eminent. But there is no break because you are on call all the time even if Mom is in a nice assisted living location.
It’s so easy to say Take Care of Yourself — but when friends and family say that to me as I care now for my chronically ill husband, I hear them say “You look tired and stressed; don’t forget to nurture yourself” and what I want to say to them is: “sure — would you maybe offer to help me with some stuff so that I can? telling me I look stressed is not helping at all”
Seriously — I am focused on building a foundation that helps the caregivers give care. There is so much more we can do instead of just saying: “You need to destress”
There is a growing trend to talking about this – but unless the disease is Alzheimers or Dementia, those caring for chronically ill with both physical and cognitive illness remain unheard.
NL
Nancy, thank YOU for taking time to describe vividly the caregiver experience many of us have / have had / will have.
I AGREE with your fourth paragraph and am smiling as I write this: Perhaps, you might ask those friends to sit with your husband for an afternoon so you can get away for a change of pace. This is how we raise awareness among those who do not understand.
Also, this is why, for many years, I’ve advocated The Five-Minute respite. When the going gets too tough, it’s best to step away. Check out this 3-minute FUN video about RESPITE that drives home the point. https://thecaregiversvoice.comtips-caregivers/the-five-minute-respite-for-caregivers/ Let me know what you think.
Keep in touch, Nancy, as you build your foundation. These are important steps to making life better for all caregivers. Again, THANK YOU.
It is so very sad that our health care doesn’t provide ‘help’ for caregivers. My mom suffers from Lewy Body Dementia. I also have a daughter (19) that has a chronic illness and has been homebound for 4 1/2 yrs. I have had very little respite care throughout the past year. I feel my health failing, I’ve never been so depressed and hate the thought of getting up in the mornings. I want to do what is right in Gods eyes, but i have to say it’s extremely difficult. I’m exhausted physically and mostly emotionally. If I give my attention to my mom, I feel like I’m excluding my daughter. If I give my attention to my daughter… I feel like I’m excluding my mom. I know my mom would take care of me in this situation, but I’ve often wondered if she could have taken care of me and her mother under the same conditions? My hope and faith is in the Lord. He’s the only one who can truly get me through this.
You describe what it genuinely means to be a member of the sandwich generation. Like a handful of roasted peanuts, going through the grinder and turning into peanut butter, you need more respite. You need more opportunities to live a change of pace from feeling squished between the two pieces of bread in your life–your mother and daughter. And if a little bit of respite can help give your hope and strength to continue caring for your family, that is good.
Please also read my reply to Nancy Lamb’s comment.
Thank you for this article. I can relate to caring for a family member and being under stress and depression. My stress is not from work or dealing with other family members but with myself for always worrying if I am doing the right thing. I do feel depressed a lot as I watch my loved one suffer more and more from Lewy Body Dementia with Parkinson’s. She has out lived expectations with this disease but not without a price. No longer can she walk, eat, make bathroom calls, carry on a conversation. A visit to the ER took all that away from her. Now we are at the point where she is hungry but doesn’t want to eat. eventually we can convince her to eat but she sometimes spits it back. That is where the stress is. Waiting for all these “Promised” trials has added most of the depression because they just are not happening in the time frame they give you.
Don, the fact that she’s lived this long with LBD and Parkinson’s is a testament to your care and advocacy on her behalf.
In the midst of all your caring remember one thing: She (and you) did not choose these diseases, they choose her.
There are few reasons why you should pay such a dear price beyond your love for Marie.
When she is gone–if you don’t exhaust yourself first and depart–you will be here to carry on her legacy.
So take care of yourself so that you may survive many MANY HEALTHY years.