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The faces of Alzheimer's: Part III: Face of the professional caregiver and the public

This is the third part of a four-part series examining how Alzheimer’s disease affects the patient, the family and the public. The Pine Journal will run this series each Thursday in November to coincide with National Family Caregiver Month.

In Part II, the person with Alzheimer’s disease (AD) received quality care at home. Problems patients experienced, and solutions home caregivers employed, made home care possible. But as the disease progresses, ultimately the caregiver becomes unable to manage anymore.  

Progressively deteriorating problems can include the following: personal hygiene issues, incontinence, falling, inappropriate sexual behavior, demanding uncooperativeness, anger and irritability, or even depression and suicide. Once problems become completely unmanageable, memory care facilities should be considered.

The physical deterioration accompanying AD can precipitate memory care relocation. The lead physician monitoring the patient should notice this, as should physical therapists if they play a role in the patient’s health management.

Therapists like Rhonda Johnson, who owns Park Avenue Therapy and Fitness, may have watched a patient’s mental ability decrease with their physical ability. In every stage of decline, Johnson encourages exercise, which elevates mood and improves sleep. People with AD are more disoriented at night, so using energy during exercise improves sleep cycles.

How do therapists judge the abilities of Alzheimer’s patients in late stage decline?

“We focus on what they can do and on mobility; perhaps now they use a cane or walker,” Johnson said. “We also examine pain if it’s an issue. The spouse can help us communicate with the patient.”

Asked how long therapy can benefit the person, Johnson said emphatically: “All the way through. But the patient is not always willing, especially when they reach severe decline. That’s when being creative and focusing on what they like to do is important.”

Memory care facilities    

Finding a facility isn’t easy. High demand means your first choice may not be available. Support group members Candi Fabre and Ernie Strandberg, when asked what worries them most as their loved ones’ Alzheimer’s disease progresses, both responded the same way: “The main worry is that they’re being taken care of properly.”

The high employee turnover at memory care facilities is troublesome to support-group spouses. With a revolving door of employees nationwide, mainly due to low pay, new employees who haven’t learned the idiosyncrasies and routines of AD patients often unknowingly ignore patients’ needs. Consensus at group is that reducing turnover will improve care.

Because I’m familiar with Evergreen Knoll, I spoke with Ginger McKean, RN and director of Health Services there. McKean first stressed that the “care suites” at Evergreen are not memory care units. When asked how occupancy in the suites is determined, she said they have 11 rooms in the suites.

“Our residents from the cottages or assisted living apartments are accepted first when rooms become available,” McKean explained. “It’s rare we accept someone from outside the Evergreen complex.”

When asked what determines whether someone needs care suites attention, Mckean replied, “Residents are evaluated for care suites if they are not thriving in the apartment setting, if living alone becomes unsafe due to mental/physical limitations, or if they start to wander.”

When asked what circumstances require an Alzheimer’s patient to leave Evergreen for a memory care facility, Mckean said when the person is “no longer a one-person lift, when their behavior becomes too aggressive, or when they cause harm to themselves, staff, or others.”   

Facility caregivers

Pay isn’t the only factor caregivers working with Alzheimer’s patients should consider. Such intangibles like love received from their patients, or self-satisfaction from doing a critical job well (meaningful to patient and family alike), cannot be measured. I’ve seen intangible bonding first hand at both Evergreen and Diamond Willow.

Carrie Berglund (my sister) and Linda Carlson work the day shift in care suites. Carrie’s been there five years and Linda since the care suites opened about seven years ago. They are organized, sympathetic and professional, and have developed a routine that is calming to AD patients. By watching those two, it becomes obvious a long-term, committed caregiver is a considerable asset to a facility caring for Alzheimer’s patients.

Bonding is evident when hugs and tears are shared openly between caregivers and family members, especially after patients die. Staff members at Evergreen care suites are committed to ensuring their AD patients, each nearing their life journey’s end, are treated with dignity and respect.

Meeting Ernie Strandberg’s lovely wife, Flo, at Diamond Willow was an honor. Though unable to speak, and in a hospice wheelchair, her eyes sparkled when Ernie gently kissed her. She smiled as he took her hands to simulate dancing while a Chmielewski polka was playing. I felt their connection. While caregivers interacted with patients, Ernie talked with them. I sensed their commitment to treat Alzheimer’s patients with dignity and respect. The beautician did Flo’s hair, one example of dignity and respect. Based on my observations, Cloquet has quality facilities for Alzheimer’s patients.

The public

By 2050, 16 million Americans may have Alzheimer’s. Those affected, including caregivers, could number 50 million. In 2014, care costs were $214 billion, with $150 billion coming from Medicare and Medicaid budgets. Future care costs will be astronomical.

Imagine, over the next 14 years, 10,000 baby boomers will turn 65 every day. That’s 55 million people by 2029, with one in eight predicted to develop Alzheimer’s. Who’s going to care for them? How are we going to pay for that care? Will there be enough care facilities built in time to handle those additional patients? What if Medicare bankrupts, as some predict?

Governor Mike Huckabee, Republican presidential candidate, said during the last debate: “The only way to control the exploding Medicare budget is to effectively treat or cure the four main drivers of Medicare expenses: diabetes, heart disease, cancer, and Alzheimer’s.”

The Alzheimer’s Association funds worldwide research at roughly $10 million per year. In 2014, the federal government allocated $566 million to research.

Obviously more money will help research, and maybe I’m a dreamer, but how about an Alzheimer’s national telethon? Look how successful the Muscular Dystrophy Association was in fund-raising. Who didn’t watch the Labor Day Telethon? When Jerry Lewis was unceremoniously replaced as MDA chairman, they were raising $100 million yearly. Additional funds like that could accelerate Alzheimer’s research. Is there another Jerry Lewis out there? While MDA fund-raising continues, now there’s a “Stand up for Cancer” telethon too. How about a “Millions for Memory” telethon?   

With your family member in memory care, you cling to the hope that research finds a cure in time to benefit your loved one.

Next week, our series concludes by focusing on Alzheimer’s research in Part IV: Face of the researcher and the future.