Whether you’re new to caregiving or a veteran, there are still things to learn about the US healthcare system. This series of videos from Alz Live provides a roadmap. This is part five of an eight part series.

Helping caregivers and families improve interaction with their loved one is the job of an emerging new field of care managers, dementia coaches and patient advocates.


They are valuable team players. You don’t have to carry the entire game on your shoulders.

Going to the Bullpen

Did you know that caregivers have their own versions of relief pitchers? They go by different names, but these champions can guide you along your caregiving journey, help you through the toughest innings and lift some of the burden.

“Advocates help empower patients and caregivers to take more control over managing the disease, set goals, stay safe in the healthcare environment and be a real part of the care team,” says professional advocate and author Trisha Torrey.

Professional patient advocates, many with nursing or social work backgrounds, ensure your loved one’s voice is heard and are there to help you make more informed medical decisions.

According to the Professional Patient Advocate Institute in Gaithersburg, MD, advocates tackle tasks like accompanying your loved one to medical appointments, negotiating with insurers, handling medical bills and paperwork, or doing research to help you better understand treatment and service options.

Money Well Spent

Patient advocates operate outside of the existing insurance reimbursement system, so you’ll pay out of pocket for their services. Yet, Torrey says, many caregivers find that it’s well worth the expense to have a knowledgable, proactive professional speak up, ask questions, resolve issues and reduce some of the day-to-day stress.

Patient navigators guide you and your loved one along the continuum of care, resolve barriers to that care and help to make each step as smooth and seamless as possible, according to Harold P. Freeman, M.D., founder and president of the Harold P. Freeman Patient Navigation Institute in New York City.

Dr. Freeman, Professor Emeritus at Columbia University College of Physicians and Surgeons, pioneered the concept of patient navigation to help low-income patients navigate the health system.

“Navigators work to connect the myriad specialists within the varied systems of care, such as primary care sites and tertiary care sites, so that each can do their job most efficiently,” he wrote.

Making Connections

Even those with health backgrounds need guidance when it comes to their own loved ones.

Barbara Glickstein, R.N., M.P.H., relied on the advice of several geriatric social workers before moving her mother from Florida back to New York.

“As a nurse, I spent a considerable amount of investigative research time talking to geriatric social workers, who were in my own professional circle, and I called some in Florida where my parents still held a residence, to see whether getting around the clock care for my mother — which would be required given her memory problems, and for safety — was a good decision knowing that all of her children live out of state.”

The social workers pointed out the difficulty of coordinating shift-based care from 1,500 miles away and helped Glickstein think through issues like her mother’s quality of life within various care settings.

A social worker’s main priority is maintaining and enhancing quality of life for the older adult and ensuring optimal functioning in the least restrictive environment.

They can connect you and your loved one with various public and private programs. A social worker can help you apply for appropriate services and cut through red tape, assist with forms like advance directives and be a valuable resource to support caregivers.

You may encounter a geriatric social worker within the hospital, skilled nursing facility, home care, assisted living facility or through a community-based service organization.

Managing Geriatric Care

A geriatric care manager will assess a client’s clinical and social service needs, arrange services, and provide ongoing care monitoring. The care manager coordinates assistance from paid service providers, as well as from family and friends, in order to enable a person to live as independently as possible.

Most institutional care managers are licensed social workers or nurses. However, private care management is still a relatively new field and is unregulated in many states, according to the AARP Public Policy Institute.

Jennifer Zajaick, who lives in Wisconsin, says hiring a care manager to help her parents in Florida was priceless. “This person is helping us put the plan together, get us connected with the resources, help us maneuver through insurance, Medicare, helping us with paperwork, helping us find respite.”

It’s important to find a “good fit,” and one who understands and respects your loved one’s goals, she says. “They’re out there and it can take away all the questions of what to do and how to plan.”

The Pro in Your Corner

“What dementia coaches do is try to help caregivers really focus on the issue at hand and not become overwhelmed by everything else because … you feel that you’re now responsible for somebody else’s life,” says Kerry Mills, a dementia coach from Westchester, N.Y.

“We teach families as well as paid care partners or volunteer care partners what is going on with the person who has dementia, what’s going on in their brain, what’s the disease, what’s not,” Mills explained. “This awareness helps family members avoid becoming defensive and judgmental, and not feel that they have to correct every single thing once they start to understand that the brain is just breaking down.”

This awareness helps family members avoid becoming defensive and judgmental.

Coaches also help caregivers better handle these changes by learning different ways to respond and approach their loved one.

“The main philosophy of a dementia coach is that we plan for tomorrow, but we live for today,” she says. “It avoids having people live with the stress of what could happen with the disease; rather, let’s live for what’s happening with your loved one today. So what do we need to do just a little bit differently?”

Mills says coaches differ from other care advocates because “it’s not about me going and doing it for people. It’s about helping them become the care partner that they want to be, to have the satisfaction of doing a great job in that role.”

Resources

Caring from A Distance is a website dedicated to the needs of long-distance caregivers for many health conditions, not just Alzheimer’s. It helps connect some of the estimated 6.9 million far-off caregivers with local resources, support services, counseling, a library on issues ranging from financial planning to end of life care, and an online “Family folder” where you can securely store all important information in one place and access from any computer.

Arch National Respite Network the ABCs of Respite Care for Consumers – offers a free downloadable guide for family caregivers on choosing a program or provider, how to pay for care, and other key concerns. Caregivers can also use this website to find a respite program in their area.

National Transitions on Care Coalition: NTOCC has developed information to help patients and their caregivers better understand issues associated with transitioning from one health care setting to another and tools to help consumers as they navigate transitions.


Liz Seegert is an independent health journalist who covers aging and related issues. Follow Liz on Twitter and see more of her work at lizseegert.com.

About Dave Kelso

Profile photo of Dave KelsoFounded by Dave Kelso in 2014, Alzlive.com is a free, daily, digital lifestyle and news platform designed specifically for the unpaid family caregivers of Alzheimer’s and dementia patients in the United States and Canada and is owned by Kelso Publishing Inc.

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