What we need to remember about Alzheimer’s & Dementia

by Jonathan Scott

“People are so afraid of getting this diagnosis,” says the attractive young RN.  “There’s been such a terrible stigma put on it. When you get a diagnosis of cancer, you can treat it. You can beat it. But you can’t beat Alzheimer’s. It’s never going to get better. Eventually it’s going to take away the person you love.”

Heather Hodge is speaking from the heart of a daughter whose mother was diagnosed at the age of 63 with the early-onset form of the disease. That was five years ago.

Heather and her sister recognized the signs long before the official diagnosis was made. “I remember asking her why she always carried a thesaurus.”

“Oh, sometimes I just forget words,” her mother said.

Then there was the time when Heather’s mother complained that someone had put all the towels into the washing machine. It was neither Heather nor her husband. Mom had forgotten what she had just done. 

It was a matter of years before a brain scan confirmed it. “I would get on the phone with my sister and we would cry together. Sometimes we couldn’t stop crying.”

Heather knows that the loss isn’t just theirs. “What’s hardest,” she says, “is when my dad gets emotional. He and my mom had wonderful dreams of what they would do in retirement. They first met when they were both hunting. They loved the outdoors. They were going to get a Fifth Wheel RV and explore.” She pauses. “That’s not an option anymore.”

Coury O’Donoghue is the Director of Program Services of the Alzheimer’s Association, Western Carolina Chapter. “The reality we’re looking at is that, without intervention and without the progress of research, the number of Americans afflicted with Alzheimer’s disease is likely to rise to 14 million by 2050.”  In her job, Coury works with what she calls “an army of volunteers” to help educate the wider general public about what we should all know about Alzheimer’s and dementia.

She, herself, knows. It’s from a background working in long-term care and, maybe most compelling of all, from personal tragedy. Her great-aunt suffered from a condition called vascular dementia. 

“If we had known what we know now, we would have been able to care for her very differently.” 

What Coury wants us to take away from her story is that we keep in mind how far medical science has come—and how far it is hoping to go—in dealing with what many describe as an epidemic, some as a looming tsunami, and everyone as a heartbreak.

“Thanks to monumental federal funding of the National Institute of Health in the last several years, more research can be supported,” she says. But she’s also quick to credit her own organization, the Alzheimer’s Association. “We’re one of the largest non-profit funders of research globally.” Currently, the Association is investing $167 million in 27 countries. They boast that their grants have funded some of the most instrumental research in Alzheimer’s science.

“We’re campaigning for better avenues for earlier detection. 

Ten years ago we could never have conceived of having a blood test to detect signs of Alzheimer’s. Now that’s in sight. But we’re also looking at prevention and minimizing risks.”

At the end of 2019, the Association published a progress report giving a snapshot of where medical research is now and hints to what might be next. The results at this early stage suggest healthy lifestyle choices in diet, exercise, and mental stimulation might help, as might keeping blood pressure in check. There are other indications that accord with what we intuitively expect: isolation resulting from hearing and/or vision loss seems to increase chances of cognitive decline.

But it’s only natural that most of us want a magic bullet—a pill that can reverse or, at least, stop the progression of dementia. One of the largest obstacles to that—one that’s monumental—is that science doesn’t know precisely what goes wrong in the brain of someone with Alzheimer’s, let alone precisely what can be done about it.

The Alzheimer’s Association wants us to know that the disease is not a normal part of aging. 

They use a compelling analogy of a factory to describe what happens in the brain. “Backups and breakdowns in one system cause problems in other areas. As damage spreads, cells lose their ability to do their jobs and, eventually die, causing irreversible changes in the brain.”

Many of us have heard about something called beta-amyloid, a substance that seems to clog up the brain. Then there’s tau, tangles that form inside brain cells. Right now Duke Health has a few medicines in its arsenal, memantine and cholinesterase inhibitors, which may keep memory symptoms under control and slow the progression of symptoms in people with moderate to severe Alzheimer’s. But, as in most of the scientific literature on dementia today, the word may is usually used to keep the optimism cautious.

The hard truth is it doesn’t appear that one single problem causes this disease and no single treatment will ever do the trick. 

That’s why the Alzheimer’s Association’s report for 2019 concludes with the hopeful news that there are 500 new potential drugs in developmental stages. Because a truly effective and safe medication for Alzheimer’s would be an unimaginable gold mine for a pharmaceutical company, the best and brightest minds have been put to work on the challenge.

As encouraging as it sounds, that type of promise unfortunately offers no benefit to Sandy Garratt, who isn’t able to wait for the future. She is a full-time caregiver for her mother, Leona Pelkey. Leona, 91, has been suffering from the progressively crippling effects of dementia for 13 years. Despite that, she is still a strikingly beautiful woman with blue eyes that shine. When her mother’s issues became more than she could handle, Sandy placed Leona into, first one, then a second, local memory care facility. Last year, Sandy brought her back to their Pinehurst home to live with her and her husband.

Sandy, with a telling sense of humor, compares her life now to the movie Groundhog Day. “I do the same routine, say the same words that comfort and encourage her, watch the Hallmark Channel and The Golden Girls. As a caregiver, I try to change that sameness up a little each day with different type of music or a different sandwich, read her a story or we look at a photo album. It helps make ‘Groundhog Day’ not quite so redundant and gives a fun element to both me and my mom.”

If we, as caregivers or potential caregivers of a loved one with Alzheimer’s or dementia (aren’t we are all potential caregivers?) want to do what we can in the face of a horrific, rising epidemic, we should learn from Sandy Garratt’s story. “When we made the decision last June to bring my mom back home,” she says, “I took four months to prepare.”

When Heather Hodge, the young RN we met at the beginning of this story, says, “It’s not going to get better,” she’s referring to the inexorable physical progression of a brain disease. She doesn’t mean that there isn’t anything we can do to make things better for ourselves or our loved ones in the face of Alzheimer’s or dementia, regardless of the stage of the disease.

The truth is, we can do plenty. Sandy is eager to share her journey of preparation. That preparation costs mainly time, and the investment has paid for itself many times over. Reading, watching, attending, and especially calling the right resources provided her a sense of empowerment in a situation that seemed completely disempowering.

Every county in our area has its own resources, so people dealing with Alzheimer’s and dementia may have to adapt some of Sandy’s story to their own location. Being in Moore County, Sandy Garratt’s first step to prepare led her to Yarona Thomas, Family Caregiver Advisor for the County Department of Aging. “I can’t say enough good things about Yarona. She is amazing. She gave me all their information on local services for caregivers with homebound loved ones with dementia.”

From her office at the Moore County Senior Enrichment Center, Yarona is able to guide families to available resources ranging from county-funded respite care to in-home aides (currently a wait list in Moore County), to the Alzheimer’s Association free 24/7 hotline. 

“The Alzheimer’s Association is wonderful,” says Yarona. “They keep me educated on all the latest research on future treatments and what’s available for families. They also make themselves easily accessible.”

Day after day, Yarona is confronted with the frustration, the hopelessness and sometimes panic of families forced into a life of seeing a loved one being taken away by dementia. But her professional experience has brought her to the exact same place that Sandy Garratt’s family experience as led her.

“You don’t ever want to feel abandoned,” says Sandy. “Remember that you don’t have to be alone in this. Help is around.”

Yarona’s face brightens when she mentions the Alzheimer’s Association 24/7 hotline. “It’s there for people to call about any issues, including how to deal with a crisis. You can call them in the middle of the night saying you don’t know what to do about your parent. 

You’re not alone,” she says, echoing Sandy. “And it doesn’t get any better than that.”

The Alzheimer’s Association 24/7 hotline is 800-272-3900. They welcome your call. We are not alone in this.

Resources

The following is a list of some of the other resources Sandy Garratt found valuable:

Duke Dementia Family Support Program. Free support groups and events.
(Natalie Leary 919-660-7542)

AOS and Friends Care provides direct care grant funds to be used toward respite care as well as music players and robo-pets. (910-585-6757 or info@aosfcare.org)

Dr. Robert Deucher of St. Luke’s Medical Practice in Carthage, NC. Dr. Deucher makes house calls to Sandy’s mother. (910-725-0809)

FirstHealth Palliative Care and Hospice. An RN comes weekly to assess Sandy’s mother. (910-715-6000)

Dementia Alliance of North Carolina. Provides a one-time reimbursement for caregiver assistance. (800-228-8738)

Videos by Teepa Snow on how to care for someone with dementia in your home. “Until There’s a Cure for Dementia…There’s a Positive Approach to Care!” teepasnow.com

Local home care agencies. (eg. Aging Outreach Services at 910-692-0683)

Facebook. Social media helped Sandy and mom find ways their family members could help from far away by sharing pictures, stories, and videos.