The care for givers: Dementia caregivers face burdens

Aug 14, 2023

Caregiving can be mentally, emotionally and physically exhausting.

Tifton, Georgia, resident Kim Blackstock knows the struggle all too well. She was the primary caregiver for her late grandmother, Geraldine Patrick.

Patrick was diagnosed with dementia approximately six years prior to her 2012 death, though Blackstock said she began noticing changes and symptoms in 2003, after the death of Patrick’s husband.

Blackstock said her grandmother said and did things that were foreign to her, like name-calling and accusing her of stealing. She recalled it as a very painful experience, and it was difficult not to take the “insults” personally.

“It’s what started my joining the Alzheimer’s Association and the geriatric field: to educate myself that it’s not them, it’s the disease,” she said. “…Through volunteering I am able to keep my grandmother’s memory alive, fight for a cure and educate others about the disease. It has given me a purpose and a drive to end Alzheimer’s.”

Caregivers often put their own care to the side for their loved one with dementia or Alzheimer’s.

“A lot of times we lose caregivers before we lose patients,” Blackstock said. “They’re not going to the doctor. They’re not sleeping properly. They’re not taking care of themselves.”

According to Alzheimer’s Association’s 2023 report, more than 11 million Americans provide an estimated $340 billion annually in unpaid family caregiving, and it is taking an enormous toll on their financial, physical and mental health.

Caregiving can consist of helping with daily chores, meals and transportation, managing the administration of medications, bathing, dressing and more.

Nearly 60% of adults in Georgia provided unpaid care to loved ones with Alzheimer’s or another dementia for the past two years, half of them spending 20 or more hours a week doing so, according to the association.

The impact on caregivers: 25% report a history of depression, and 22% frequent poor mental health. Nearly 12% report poor physical health.

A new study by Seniorly, a San Francisco-based company that connects families and senior citizens with resources through its online platform and network of advisers, shows family caregivers in Texas are the sixth most burned out in the nation.

Texas’ ranking shows 34.4% of caregivers report having two chronic health conditions, and 12.6% are mentally distressed. The ranking is based on factors including multigenerational households, Alzheimer’s disease, long-term care workers, age dependency ratio and health issues reported by caregivers.

The study also found that 23% of caregivers say their own health has declined, 85% report mental distress and 50% during the pandemic had serious suicidal ideation.

Similar metrics for Oklahoma revealed that 59.1% of caregivers have chronic health conditions and 24.4% report having depression. About 17.2% are reported to be in poor physical health.

In addition, women, accounting for 61% of caregivers, are disproportionately impacted. Most of those — 75% — are women aged 45-54 who also work outside of the home. The study also found that a woman’s lifetime earnings decrease 15% due to caregiving.

One particular stress is with “sandwich caregivers” who have to take care of children as well as their elderly loved one. Blackstock had two children, ages 1 and 6, when her grandmother moved in with them.

Approximately 33% of dementia caregivers are in the “sandwich generation,” caring for both someone with dementia and a child or grandchild.

But there are some positives to caregiving, Blackstock said. Sometimes the patient has beautiful moments of clarity.

“You have one-on-one time with your loved one. They’re just different,” Blackstock said, adding that caregivers may learn things about their family member’s childhood that they never knew as their mind drifts to the past. “You might be their best friend, you might be their sister, not their daughter.”

Caregiver support and resources

Support groups are common in many communities across the country to assist caregivers and those living with dementia.

“When you openly talk about Alzheimer’s and dementia, you’ll find several friends who can relate,” Blackstock said.

A dementia caregivers support group in Greensboro, Georgia, has remained functional through the pandemic. Linda Robinson, who started the group, said that success is due to their strong bond and caring attitude with one another.

Robinson said support groups give caregivers the opportunity to exchange helpful tips and knowledge on how to best care for loved ones with dementia, while also getting emotional support in the process.

The most important thing a caregiver can do is ask for and accept help, advocates say. Hold a family meeting, set schedules of who will care for your loved one or get help from people at your church, Blackstock recommended.

“Ask for help — that’s the biggest thing caregivers will not do because we don’t want to burden anybody,” she said.

Caregivers can get support and training from the Alzheimer’s Association via alz.org or the 24/7 helpline at 1-800-272-3900. The association can connect a caller with local support groups, education, training programs and links to information online.

Statehouse reporter Ali Linan of Texas and Grace Wood of The Union Recorder in Georgia contributed to this report.

Over the past two months, a team

of reporters from CHNI newspapers has been exploring the many painful aspects of dementia, its impacts, costs and possible treatments and more, for a multi-part special report that contains a lot of important information for patients and caregivers. Our team has also looked at the development of drugs that have shown promising signs for slowing the development of, but not yet curing, dementia. The series, with additional photos and video, is also available online at pressrepublican.com

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