If you have never cared for a loved one living with dementia, count yourself lucky. Over 11 million people across the U.S. provide unpaid care for the 6.7 million living with Alzheimer’s disease and other forms of dementia, according to the Alzheimer’s Association. On average, they donate about 30 hours per week to this effort, with the time increasing as the disease progresses.
In Colorado alone, more than 160,000 people provide unpaid care for the 76,000 living with dementia. While Alzheimer’s is the most common form of dementia, over 1 million people in the U.S. are living with Lewy Body Disease (LBD), the second-most common form of neurodegenerative dementia that afflicted actor Robin Williams. Unlike Alzheimer’s, which is twice as likely to affect women as men, LBD is more likely to strike men.
There currently is no cure for any form of dementia, but the hallucinations, changes in alertness and attention, and physical declines caused by LBD create unique caregiving challenges. The physical and psychological toll that caregiving takes on loved ones can be substantial. Sharing that burden helps. For that reason, a Denver-area LBD support group met recently to share some of their tips, stories and a few requests for their family and friends.
Jaye Kephart, Macky (Maxine) Tatz and Deb Wells are a time-tested trio of caregivers. Combined, they provided nearly 30 years of loving care for their husbands with LBD. Wells’ husband, John, passed away a dozen years after his diagnosis at age 58. Both Kephart and Tatz’s husbands, Mike and George, recently transitioned to assisted living residences as their conditions have deteriorated.
Laughter and tears
Perhaps the most striking thing about seeing these three caregivers together is the amount of laughter, interspersed with occasional tears. Despite the sadness they experience with and on behalf of their loved ones, “it’s possible to find something joyful every day,” said Wells.
From the difficulty of getting a proper diagnosis and the dire shortage of geriatric specialists to the disheartening lack of engagement by long-time friends and some family members, the LBD caregivers turn to one another for guidance and companionship. Therefore, it’s no surprise that “find a good support group” is their No. 1 recommendation. And their top wish: more education on dementia in general and LBD specifically.
“No one gets it” like a fellow caregiver, said Tatz. “Even most of the doctors don’t get it.”
Kephart, who sports tattoos on each forearm (facing her) that read: “Shut up” and “It’s not about you” as reminders that her husband has a disease that is beyond his control, notes that the support group is the one place where caregivers can talk openly about anything, “even incontinence,” without fear of judgement.
Their goal is to “normalize” dementia so it is recognized much like cancer or heart disease as a condition that requires care and support. And, hopefully, some of that support would come from the network of lifelong friends who, too frequently, find reasons to stay away after the dementia diagnosis is received.
“We had close 40-year friends,” said Kephart. “Not one has visited.”
“It’s difficult for friends to see (George) disappear,” Tatz acknowledged. “But I know he’s still in there.”
The caregivers’ tips
- Don’t say you’re going to visit – do it. “If you want to give me a gift, visit my husband,” said Kephart. “He would enjoy it, and I could use the day off.”
- “People say ‘let me know if there’s anything I can do,’ but what they’re really hoping is that you never ask,” Wells said.
- Don’t ask. “People are sweet and ask ‘how’s he doing,’ but don’t understand dementia,” said Tatz. “He’s doing as well as he can, all things considered.”
- Anticipate that things could get worse. “Get ready for the next phase,” warns Wells. “It’s coming.” Kephart said that, as the dementia deepens, the personality of the individual may change. “They can get mean. They can yell. They can fight.” She noted that, in a worst-case scenario, their loved one could be kicked out of their care facility. “Then what?” she said.
- Don’t ask, part 2. “Don’t ask me if my husband remembers me,” Kephart said, noting that at some point, there’s a good chance he won’t. “It hurts (to think about that),” said Tatz. Kephart added that when she goes to visit her husband at the care center, she says: “Hi, it’s Jaye, your wife,” as she enters the room. “Why would I test him?” she asks.
- Accept help. No one can deal with dementia single-handed. “You’ll need it,” Tatz said.
- Build your team. Finding a good support group is the No. 1 recommendation of the group.
- Get your paperwork done. Don’t wait until it’s too late to get the power of attorney, do-not-resuscitate documents and other legal or medical forms.
- Plan ahead. The disease brings changes – plan for them before they’re needed, including things like ramps, a safety bar in the shower, walkers, and identifying resources like Lift Assist.
- Don’t be too hard on yourself. “You’re going to make mistakes,” said Wells. “Give yourself grace; no one expects to take this on.”
- “It takes over your life,” said Tatz. “I’m still grieving (after the diagnosis), and I will again when he goes…unless I go first.”
- Remember the good times. “I know (Mike) will always know me,” said Kephart. “He has been with me. He has witnessed my life. He has loved me. Maybe he can’t express it or show it, but there is no question in my mind that he will always know me!”
The caregivers’ challenges
There are a number of physical challenges facing care partners for people living with dementia.
They include:
- Caregiving while working – More than half of employed caregivers work full-time (56%), 16% work between 30 and 39 hours, and 25% work fewer than 30 hours a week. On average, employed caregivers work 34.7 hours a week.Wells noted that she worked full-time for several years as a contact center executive until her husband, John, needed more help with daily activities.
- Time away from work – 69% of working caregivers caring for a family member or friend report having to rearrange their work schedule, decrease their hours, or take an unpaid leave in order to meet their caregiving responsibilities.
- Impact of stress – 59% rated emotional stress of caregiving as high to very high, and the chronic stress of caregiving is associated with physiological changes that could increase the risk of developing chronic conditions.
- Depression – 30% to 40% of dementia caregivers report depression vs. 20% for caregivers for individuals with schizophrenia or 19% for stroke survivors. Anxiety is reported by 44% of dementia caregivers.
- Time commitment – In the last 12 months of life, people with dementia relied on more hours of family care (64.5 hours per week) than people with cancer (39.3 hours).
- 59% of caregivers felt they were “on duty” 24 hours a day.
- 72% of family caregivers experienced relief when the person with dementia died.
Care partners for loved ones with dementia will frequently talk about the importance of the role they play in the life of their partner. Because of the high cost of professional care and high employee turnover, the role of family caregivers is all the more essential.
“My job is to keep him safe,” Kephart said.
Help is available
There is a variety of programs and services available through the Alzheimer’s Association to help families dealing with all forms of dementia, including LBD. Support groups are offered at a variety of locations, both in-person and online. Early-stage programming is available to all, and there are classes for caregivers including Effective Communication Strategies, Dementia Conversations, Managing Money and Healthy Living.
To learn more about educational programs and services provided at no charge to families, go to
alz.org or call the free Alzheimer's Association 24/7 Helpline at 800-272-3900.
Alzheimer's Association
The Alzheimer's Association leads the way to end Alzheimer's and all other dementia — by accelerating global research, driving risk reduction and early detection, and maximizing quality care and support. Our vision is a world without Alzheimer's and all other dementia.™ For more information, visit www.alz.org or call the 24/7 Helpline at 800.272.3900.