Support available for caregivers of loved ones with chronic conditions
Special to the Daily
Local resources for caregivers
• Eagle County Caregiver/Memory Loss Support Group: This group exists to provide a safe environment for caregivers to share their experiences with one another while accessing local resources, as well as those from the Alzheimer’s Association’s Colorado Chapter. It takes place on the second Tuesday of each month from 4:30 to 6 p.m. at the Eagle River Presbyterian Church in Avon.
• Aging Well Eagle County: This website provides a comprehensive collection of information about all of the resources available for older adults in Eagle County. Visit www.agingwelleaglecounty.org.
• Eagle Valley Senior Life and the Alpine Area Agency on Aging: Both of these organizations offer caregiver support, including financial assistance with respite support. For Eagle Valley Senior Life, visit www.evslife.org or call 970-977-0188. For the Alpine Area Agency on Aging, visit www.alpineaaa.org or call 970-468-0295.
• Alzheimer’s Association — Colorado Chapter: This organization’s website provides information about the disease for those suffering from it and their caregivers alike. It also offers educational programs and a 24/7 helpline. Visit www.alz.org/co, or call the helpline at 800-272-3900.
Google the phrase “caregiver stress,” and you’ll get literally thousands of links to forums and articles with tips for caregivers on how to cope with stress, lists of warning signs for caregiver burnout and how to conquer caregiver stress from websites and publications ranging from the U.S. National Library of Medicine to the Huffington Post to Facebook. Add the words “dementia” or “Alzheimer’s” to the phrase, and you’ll find thousands more.
The majority of these resources are targeted at informal caregivers, which is defined by the Family Caregiver Alliance as an unpaid individual, such as a spouse, partner, family member, friend or neighbor, involved in assisting others with activities of daily living and/or medical tasks.
According to the Family Caregiver Alliance, an estimated 44 million Americans ages 18 and older provide unpaid assistance and support to older people and adults with disabilities who live in their community. The value of this unpaid labor force is estimated to be at least $306 billion annually, nearly double the combined costs of home health care ($43 billion) and nursing home care ($115 billion).
Informal caregiving is both prevalent and, often, necessary in Eagle County, where a significant number of older adults reside — approximately 9 percent of the population in 2015 was older than 65 — and, according to the Eagle County Department of Public Health, the number of adults age 60 or older in the Rural Resort Region (which includes Pitkin, Garfield and Eagle counties) is projected to quadruple between 2010 and 2035.
In the Northwest Colorado Council of Governments’ Rural Resort Region Gap Analysis of Services for an Aging Population (2011), almost 60 percent of older adults in the region reported providing care for someone else, including grandchildren, older adults and other family and friends. One in five older residents reported providing a significant amount of care (defined as more than 15 hours per week), and about 45 percent of senior caregivers provided care to other older adults.
Research has shown that individuals who provide care for a friend or family member with a chronic or disabling condition can be at risk for developing their own emotional, mental and physical health problems. Informal caregivers report higher levels of stress, anxiety, depression and other mental health effects than non-caregivers. And, according to the Family Caregiver Alliance, caregivers who experience chronic stress may be at greater risk for a host of other health issues, including cognitive decline such as loss in short-term memory, attention and verbal skills.
“The ‘stress response’ is supposed to be a temporary thing, with hormones surging, then when the event is over, everything is supposed to return to normal,” said Dr. Dennis Lipton, an internist at Vail Valley Medical Center.
“Our bodies are not made to be on high alert all the time. This constant stress causes disrupted sleep, elevated blood sugar, elevated blood pressure and an impaired immune system, all of which can increase risk of chronic disease like heart disease and cancer. It also robs people of the joy of living and leads to depression and other mental illness.”
In situations where the patient has dementia, the health impacts on the caregiver can be worse. The Family Caregiver Alliance reports that about 40 percent of family caregivers of people with dementia suffer from depression compared to 5 percent to 17 percent of non-caregivers of similar ages. These caregivers also report a higher physical strain from caregiving than caregivers not caring for a patient with dementia (28 percent versus 17 percent for other caregivers).
Dementia takes a toll
Pat Nolan, who is the healthy aging coordinator for Eagle County and facilitates the Eagle County Caregiver/Memory Loss Support Group, said she is seeing a trend in the county toward more individuals caring for spouses in the early stages of Alzheimer’s disease.
“The needs can be dramatically different at this stage,” Nolan said. “(The patient) is usually at the beginning stages of the disease and maintains the ability to participate in daily activities and are usually quite social.”
According to the Alzheimer’s Foundation of America, Alzheimer’s disease is a progressive, degenerative disorder that attacks the brain’s nerve cells, or neurons, resulting in loss of memory, thinking and language skills and behavioral changes. Alzheimer’s disease is the most common cause of dementia, or loss of intellectual function, among people age 65 and older.
“When it comes to Alzheimer’s dementia, every person presents uniquely, yet there are similarities throughout each stage,” Nolan said. “The caregivers that have been through this group are incredibly strong and resilient, and I have tremendous respect for each one of them as they go through this journey.”
Nolan has facilitated the Caregiver/Memory Loss Support Group for about seven years and has worked with older adults in some capacity for 23 years. She emphasizes that it’s important for caregivers to understand they are not alone, which is where support groups such as the one she facilitates become important.
“We currently have a very dynamic group who discuss the latest research and brainstorm possible new programs, while sharing experiences and asking for advice from peers,” Nolan said. “One might both laugh and cry at a meeting, but mostly you leave with a positive feeling. It is critical for all caregivers to take care of themselves; for example, exercise, get out in nature, sleep, eat balanced meals, take time for yourself, laugh when you can and absolutely ask for help.”
One of the caregivers Nolan has worked with through the support group shared her experience of being a caregiver for her husband, who had Alzheimer’s.
“When a loved one is diagnosed with Alzheimer’s, both the patient and the caregiver are thrown into emotional turmoil,” the caregiver said. “You both know that there is no cure, that the one afflicted with the disease will continue to deteriorate and that the course of the disease will last for years. It is a devastating diagnosis.”
One of the most difficult aspects of being a caregiver of someone with Alzheimer’s, she said, is that the patient’s condition keeps changing.
“You adjust to one thing, like the person losing the ability to talk rationally, and life goes along smoothly until the next thing, like the inability to feed oneself or incontinence, happens,” she said. “Each change brings a realization that the person is that much closer to the end of life, and along with that realization comes grief.
“You are losing the person that you once knew, little by little, and you mourn along the way both for yourself and for the patient. … Every patient is different and one cannot predict what will happen next, so you learn to be flexible.”
The caregiver said that despite these and other challenges, she wouldn’t trade the experience of being a caregiver for her husband and noted that she was able to find joy throughout it all.
“You learn to live in the moment, you learn to really see the patient,” she said. “The core of that person gets buried deep inside, but I believe it is still there. Alzheimer’s patients are often thought of as people sitting in wheelchairs, staring into to space, all the while drooling. What outsiders need to know is that these patients still have feelings. They still can laugh, cry, feel pain and, most of all, they do respond to love.”
Nolan agrees that changing the perception of Alzheimer’s disease is an important step toward increasing the quality of life both for those caring for loved ones diagnosed with the disease and for those diagnosed with it themselves.
“It is crucial that we change the face of Alzheimer’s and reduce the stigma,” Nolan said. “By doing so, we hope that more people will seek assistance earlier and be able to plan ahead, while maximizing their independence for longer.”