Alzheimer's Disease - WKTV Journal

At Emmanuel Hospice, legacy projects typically involve hand molds, fingerprints and heartbeat recordings, often paired with a quote, poem or song. (Photo Courtesy, Misty Galant)

By Emmanuel Hospice
greer@wktv.org

Sentimental objects have a special way of keeping the memory of a loved one alive.

In hospice, creating keepsakes or legacy items has become increasingly common as a meaningful way to help cope with grief by physically preserving the memory of a loved one through tangible items.

At Emmanuel Hospice, legacy projects typically involve hand molds, fingerprints and heartbeat recordings, often paired with a quote, poem or song. As a bereavement coordinator, Katie Mayberry has facilitated numerous legacy activities, alongside volunteers and other care team members. She’s found them to be rewarding for everyone involved.

“Legacy projects are very patient-centered experiences that have a profound impact,” Mayberry said. “The activities themselves create a memory in the moment, often elicit stories and lead to more in-depth conversation afterwards. Loved ones then have a keepsake to reflect on later and use to process their grief.”

The projects, offered through the nonprofit’s art legacy and music therapy programs, are unique to each individual patient and can incorporate personal elements. The ultimate purpose, Mayberry says, is to foster connection. The activities also can be adapted for a patient’s energy level and comfort, including those transitioning to the active dying stage.

“We make sure every legacy-type experience is met with lots of grace,” Mayberry explained. “That’s especially important during times when patients aren’t able to participate in the same way as someone earlier in their end-of-life journey.”

That was the case for Misty Galant’s husband, Jon, who received care from Emmanuel in 2023 when his health began rapidly declining in the end stage of Early-Onset Alzheimer’s Disease.

“Katie was supporting our family, and when it became clear Jon was beginning to transition, she asked if we would be interested in a hand mold,” Galant said. “I said absolutely, and she showed up the next morning. It was a nice distraction from the condition my husband was in, and to have a conversation with Katie the whole time we were waiting for the mold to harden.”

With Misty and Jon, Mayberry remembers the experience was very intimate. The women knelt together on the ground next to Jon’s bed to ensure he stayed comfortable throughout the process.

“It is an imperfect process to create the hand molds, in the loveliest way,” Mayberry explained. “You must be in close proximity to one another, relatively still and physically present for 10 minutes.

“It often brings a lot of laughter, actually, and in a sense, joy. Stories come up that we don’t anticipate. It can also be a really emotional experience between patient and their spouse, or whoever they’re holding hands with.”

While Misty and Jon’s hand mold was a little more challenging to set up, Mayberry says theirs was one of the most detailed she has ever obtained.

“You could see all 10 fingers and their wedding rings, and that was really important,” Mayberry said. “I just remember it being a really wonderful experience with both laughter and tears.

“Misty has the hand mold on a shelf with a picture of them. It is just so rewarding to see something like that and know it’s so important for her to be able to have it. It was such a meaningful experience. That’s what we’re aiming for.”

Misty added: “I’m not sure what it is about the hand sculpture, but it’s just such a visual reminder I think because it’s actually our hands. Anytime I look at it, it’s a visual reminder of Jon and the bond we had. It’s the most personal gift I received during that time. I love it.”

Misty now volunteers with the nonprofit. As interest in legacy projects continues to grow, Emmanuel Hospice is seeking the support of additional volunteers, as well as donations, to help serve patients and families. Those interested may call 616-719-0919, email info@EmmanuelHospice.org or visit EmmanuelHospice.org for more information.

By WKTV Staff

deborah@wktv.org

Alzheimer’s is still a mystery to those in the medical field (Courtesy, pxhere.com)

Few diagnoses are more frightening than hearing that one has Alzheimer’s or another disease that causes dementia.

The Alzheimer’s Association estimates about one in nine Americans over 65 have Alzheimer’s disease. This number is expected to more than double in 25 years.

“Alzheimer’s is a complicated disease,” said Kevin Foley, MD, FACP, AGSF, Medical Director of the Trinity Health Medical Group Alzheimer’s Disease and Memory Disorders Program at Trinity Health Hauenstein Neurosciences – Grand Rapids Campus. “Even though it was discovered more than 100 years ago, we have yet to really understand what causes it, whether genes, environmental triggers, or something else.

“The formation of amyloid plaques in the brain is a hallmark of the disease, and the process can begin up to 10 years before a person shows any symptoms.”

While advances in treating cancer, diabetes, heart disease, and other neurodegenerative diseases like Parkinson’s, have been made in recent years, nothing seemed to have worked as well for treating Alzheimer’s.

Hope for slowing cognitive decline

Lecanemab can slow the progression of mild cognitive impairment and mild dementia (Adobe Stock Photos)

In 2021, the Food and Drug Administration (FDA) approved aducanumab, an amyloid-beta-attacking monoclonal antibody—a lab-made version of an antibody found in the human immune system.

Aducanumab was the first drug ever approved for slowing cognitive decline in Alzheimer’s patients. But trial data showed – at best – hints of a possible, small average slowing in cognitive decline.

In 2023, the FDA approved lecanemab (Leqembi®) using the Accelerated Approval Pathway (AAP). Under the AAP, the FDA may approve drugs for serious conditions where there is an unmet medical need and a drug is shown to have an effect on a surrogate endpoint that is reasonably likely to predict a clinical benefit to patients. In this case, the surrogate endpoint is removal of amyloid.

“Lecanemab can slow the progression of mild cognitive impairment and mild dementia due to Alzheimer’s disease by eliminating amyloid protein from the brain,” said Dr. Foley. “It is classified as a ‘disease modifying’ drug, and the evidence so far shows a modest effect on slowing memory decline by several months.”

This treatment may be effective for patients in the early stage of the disease when symptoms, such as difficulty remembering names and completing tasks, are still manageable without much daily support.

Procedure and cost details

Dr. Foley and his team have two patients currently undergoing lecanemab infusions. More patients are going through the screening and approval process to see if they are a candidate for the treatment.

Trinity Health Grand Rapids (Courtesy, UMHW)

If a patient is approved, lecanemab is given as IV infusion every two weeks for 18 months. Brain MRIs will be done along the way to monitor for side effects. Patients also must be re-certified at six months to continue the treatment.

Health insurance plans will cover some of the expenses associated with the screening and treatment. There is no cost for the recertification at six months. An annual estimate for all non-covered expenses associated with screening and treatment is $6,000 – $7,000. The actual amounts covered are insurance company specific, so actual out of pocket costs could be less than this estimate.

Hope for the future

“For patients with Alzheimer’s, the hope of staying at the same level longer and slowing how fast it progresses, so they can keep doing what they enjoy, is important,” said Dr. Foley. “While this is not a ‘cure’ for disease, further studies may lead to an even more successful treatment.”