36. Learn to Navigate Support Systems: Four Essential Tips

“An educated and confident family caregiver who knows what to do in their role is really the absolute best medicine for the care receiver.” Dr. Carolyn Clevenger

Do you know extensive research specifically focused on dementia caregivers is being conducted? Are you aware of innovative studies designed to equip family caregivers with navigation skills? Now you will, and you’ll be learning about valuable opportunities to strengthen your caregiving journey.

We are Sue Ryan and Nancy Treaster. As caregivers for our loved ones with Alzheimer’s and other types of dementia, we are continuously learning new ways to support our health and well-being, and that of our care receivers. We recently discovered the groundbreaking dementia caregiver research, the CANDO Study, Dr. Carolyn Clevenger, DNP, RN, GNP-BC, AGPCNP-BC, FAANP, FGSA, FAAN, Professor at the Emory University Nell Hodgson Woodruff School of Nursing is conducting. When most people think about dementia research, they focus on studies involving people living with dementia or pharmaceutical treatments. This crucial area of research focuses on supporting the family caregivers themselves.

Dr. Clevenger is a professor and gerontological nurse practitioner who is nationally recognized as an education leader in advanced practice nursing and geriatrics. Carolyn founded, and directs, the comprehensive dementia care model called Integrated Memory Care (IMC), which provides memory and primary care in a single integrated approach for people living with dementia and their care partners.

We’re sharing four essential tips from Dr. Clevenger’s research and experience that can transform your caregiving approach.

Tip 1: Understand Different Levels of Care Early

One of the biggest mistakes made by caregivers — because they don’t know — is waiting until there’s a crisis to explore care options. Understanding what’s available before you need it gives you confidence and peace of mind.

The care landscape extends far beyond what most families initially understand. While people typically know about office visits, hospitals, and nursing homes, there’s an entire spectrum of care options available:

Home-Based Care:

Home care services (different from home healthcare) that provide companionship
Assistance with daily activities and personal care
Respite services for family caregivers.

Community-Based Programs:

Day programs offering structured activities and social interaction
Adult day services that give caregivers daytime breaks
Support groups and educational programs.

Residential Care Options:

Independent living communities (55+)
Assisted living facilities
Specialized memory care units
Skilled nursing facilities (formerly called nursing homes).

Key considerations:

Each level has different eligibility requirements and payment structures
Availability varies by state — some follow federal guidelines, others have state regulations
People often wait until they desperately need memory care but try to access assisted living instead — creating significant, unnecessary stress.

One key insight from Dr. Clevenger’s work is that by understanding these levels early in your journey, you can make informed decisions before crisis situations arise.

Tip 2: Stay Ahead of Financial Challenges

Financial planning becomes critically important in dementia care because so much of the care needed will be self-pay. The decisions you make today have significant implications for your entire dementia care journey.

Protect your assets while maintaining oversight:

Keep an eye on your loved one’s finances without putting your name on their accounts
Adding your name ties your assets to theirs, which can affect eligibility for services later
Maintain monitoring capabilities without legal ownership.

Understand the early warning signs:

People diagnosed with Alzheimer’s experience declining credit scores in the five years before diagnosis
Judgment and executive function are impaired before obvious memory issues appear
Your loved one may make financial decisions that aren’t in their best interest.

Watch for judgment impairment issues:

Difficulty weighing pros and cons of financial decisions
Inability to properly anticipate consequences of choices
Problems with day-to-day bill paying and major financial decisions
Online bill pay can be particularly challenging for those who aren’t “digital natives”.

While families often focus on memory symptoms like repetitiveness or forgetting recent events, judgment impairment occurs earlier and can lead to serious financial problems.

Sue shared:

For as many caregiving journeys as I’ve been on, Dr. Clevenger’s first two tips about understanding early warning signs were new to me. I reflected back on several of my journeys and saw some things differently. I hadn’t realized them before — they’re real!

Tip 3: Leverage Legal Support from Elder Law Experts

Financial and legal planning go hand in hand, and dementia caregiving requires specialized legal expertise. While general estate planning attorneys create wills and basic estate plans, elder law attorneys understand the specific trajectory and challenges of dementia.

What sets elder law attorneys apart:

Their entire firm is structured to support families comprehensively
They often have care managers on staff or connections to care management services
They can help families navigate complex care decisions beyond just legal documents.

Specialized dementia expertise:

Everyone in the firm understands how to interact respectfully with people living with dementia
They won’t confront your loved one about cognitive impairment
They focus on understanding values, priorities, and what matters most to your loved one
They anticipate what’s coming next in your journey rather than just addressing current needs.

Long-term benefits:

They help set up legal structures that serve you well as the disease progresses
Families consistently report that getting an elder law attorney early was one of their best decisions
The investment in specialized legal support pays dividends throughout the caregiving experience.

Nancy explains:

Sue always raves about working with elder law experts and about how transformational it was to her journeys. We interviewed two experienced elder law attorneys on our podcast episode 31. You can find more detailed information there.

Tip 4: Take Evidence-Based Classes

Education is crucial for effective caregiving, but, not all educational resources are created equal. Evidence-based classes are more valuable. They have been tested specifically through randomized clinical trials, so they are proven effective in reducing caregiver burden while increasing confidence and mastery.

Evidence-based courses are more effective because they:

Follow adult learning principles with structured information delivery
Include specific how-to activities and hands-on practice
Offer opportunities for both supervised and unsupervised practice
Provide feedback from trained facilitators and peer participants.

Measurable outcomes:

Reduce burden, strain, depression, and anxiety
Build positive aspects like mastery, confidence, and self-efficacy
Give you answers to questions you didn’t know to ask
Provide you with the crucial sense of “I’ve got this”.

Recommended programs:

Savvy Caregiver course: Available face-to-face or online (in-person version includes support group benefits)
“Best Programs for Caregivers” website: A collaboration between the Benjamin Rose Institute on Aging and Family Care Alliance featuring only research-proven programs.

These classes expose you to information you won’t find elsewhere and build problem-solving skills to handle challenges even when you don’t know what’s coming next.

The CANDO Study: Training Caregivers as Navigators

Dr. Clevenger’s current research project, CANDO (Caregiver As Navigator Developing skills Online), trains family caregivers to navigate four critical systems: healthcare, financial, legal, and family systems.

Course structure:

Six-week online course following three families through different types of dementia
Each day presents real-life scenarios with appropriate responses and preventive measures
Videos from subject matter experts including elder law attorneys, investigators, estate planners, and healthcare providers.

Study benefits:

Participants receive honorariums for participation (up to $240 in gift cards)
Families are followed for eight months to measure immediate and lasting benefits
Open to U.S. residents primarily caring for someone with dementia not in hospice or skilled nursing care.

The Research Makes a Difference

The growing body of dementia caregiver research represents hope and validation for families everywhere. These studies recognize that supporting the caregiver directly benefits both the caregiver and the person living with dementia.

Research consistently shows that educated, confident caregivers who understand their role and have navigation skills:

Provide better care and experience less burnout
Are more satisfied in their caregiving role
Are better equipped for the marathon of dementia care.

By understanding levels of care early, staying ahead of financial challenges, leveraging specialized legal support, and participating in evidence-based education, you’re building the foundation for sustainable, effective caregiving.

Caregiving for a loved one with a diagnosis is a learned skill. It’s not something anyone naturally knows how to do. The research being conducted today is designed to give you the tools, knowledge, and confidence you need to navigate your journey with confidence and peace of mind.

You don’t have to figure it out alone! The research is here to work for you.

To see the flyer for the CANDO study, click here.

If you’re interested in participating in Dr. Clevenger’s study, click here.

Have you taken evidence-based caregiving classes? Please share your experiences in the comments below or on our Facebook or Instagram pages.

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