The Six Caregiving Stages

Walking With Caregivers: Unveiling Their Unique Needs 

Caregiving is a deeply personal journey with unique needs that change over time, often influenced by a variety of factors ranging from available support to the caregiver’s relationship with their loved one. At Trualta, we understand that there’s no one-size-fits-all solution. That’s why we work hand-in-hand with caregivers and caregiving experts to develop our training and platform, ensuring it meets diverse needs—from disease-specific information and condition management to emotional care and peer connection. One of these experts is Denise Brown, whose work in creating the six caregiving stages offers invaluable insights and practical support tailored to each stage of the caregiving experience. Whether caregivers are just starting as an expectant caregiver or finding closure as a Godspeed caregiver, her framework helps caregivers understand their purpose and find resolution in their caregiving stage. Keep reading to explore these stages, and discover how Denise’s contributions help us better understand and support the caregivers who selflessly care for their loved ones.

“Why me?” “Why now?” “What now?”

Family caregivers regularly asked me these questions after I launched my first online caregiving community in 1996.

A year later, I sat down with the intent to answer their questions with hopeful realism. I took inspiration from the staging of a disease process, like Alzheimer’s. When we understand our reality is a reflection of the disease process, we can release judgment and embrace acceptance. We also can start to prepare for what’s next.

I wanted to stage the caregiving experience to help family caregivers better understand their experience right now while also offering insights to help them prepare for what’s next. Most importantly, I wanted to help family caregivers understand that their emotional responses to a trying situation (like feeling anger, grief, frustration and overwhelm) is normal.

After another year of testing the concept, I landed on six caregiving stages. Each stage features a keyword to prompt an action while also serving as a coping strategy. When family caregivers feel unsure of what to do, they can remember a keyword. They gain a keyword in each stage, carrying them forward into the next stage.

Each stage also includes a description about challenges, an insight about a purpose, and a list of suggested next steps. I’ve included a synopsis of the six stages, including the keywords, challenges and purpose, below:

Stage 1: The Expectant Caregiver: In the near future, you may help a family member or friend.

Keyword: Ask

Challenge
To learn and understand your caree’s needs: health, financial, social, legal and emotional.

Purpose
This is your time to prepare and focus on engaging in effective conversations. You’ll want to talk with your family members about how they define quality of life, how they would want to spend their last years and days, and what they value. These on-going conversations will help inform future choices and decisions.

Although your attention may focus on aging family members, these conversations will be important to have with everyone important in your life. Whenever you can, ask.

Stage 2: The Freshman Caregiver: You are starting to help a family member or friend.

Keyword: Find

Challenge
To discover solutions that work and to feel comfortable moving on from what doesn’t.

Purpose
This is your time to experiment, to get your feet wet and see what works. Keep up with your hobbies and interests, even if only the ones that you enjoy most. Make time for yourself a priority.

Stage 3: The Entrenched Caregiver: You are helping a family member or friend.

Keyword: Receive

Challenge
To find the support and strength to continue.

Purpose
To create a familiar schedule for both yourself and your caree. Consider creating a routine for yourself that includes time to manage the unexpected that pops up during your day; a ritual which begins and ends your day; and a “healthiness” activity to nurture your spiritual, emotional, physical and mental needs.

Stage 4: The Pragmatic Caregiver: You are still helping a family member or friend.

Keyword: Welcome

Challenge
To gain a greater understanding of yourself and your caree.

Purpose
You’ve settled into your role and your routine; now is your opportunity to step back and reflect. The first three stages laid the groundwork for this stage, your period of personal growth.

Stage 5: The Transitioning Caregiver: You are experiencing two transitions:One prior to your caree’s death and then after your caree’s death.

Keyword: Allow

Challenge
To let go of the fear of the end, to understand that reaching the end isn’t about your failure but about the natural cycle of life. Now, you’ll move from the “doing” of caregiving to focus on the “being.” You’re used to doing and going. It’s time now to make being with your caree the priority.

During caregiving, you’ve been in a battle. Most recently, you’ve been fighting death hoping to keep death’s visit to your caree at bay. 

You can end the fight because you’ve won the battle. You’ve done enough and are enough. You’ve long worried that a caree’s death could somehow be your fault, but you can now know that you’ve given your caree a life for as long as your caree’s life could continue. You no longer have to try everything and do whatever is possible. You understand that over-doing now could create more discomfort and pain for your caree.

When you end your internal battle, you can be fully present with your caree. Your peaceful presence is your power.

Purpose
To walk with your caree during his last months and weeks, implementing his or her decisions about end-of-life care that you both discussed during Stage I (or as soon as you could).

Stage 6: The Godspeed Caregiver: Your caregiving role has ended.

Keyword: Treasure

Challenge
To integrate your former role as a family caregiver into your new life.

Purpose
To implement your lessons learned from your role as caregiver, from your caree and from your family members and friends. During this stage, which can last as long you wish, even your lifetime, you reap the benefits of your efforts.

Guidance For A Complex Experience

I tested this concept as I cared for my parents and adjusted the concept as I captured a new understanding of how the stages feel. For instance, the keyword, Welcome, gained a new meaning for me after a difficult day with my dad, who often made decisions that tested my patience. As a Pragmatic Caregiver, I wondered how Welcome could show up during a bad day. I realized I could welcome the good and the bad emotions. Welcoming my frustration and impatience meant I didn’t waste energy fighting those emotions. Welcoming, rather than resisting, gave me back my day because I also could welcome coping strategies to feel better.

The concept has transformed into workshops attended by health care professionals and family caregivers in all stages. It also provides the foundation for the training programs I’ve developed, including a program to train Caregiving Consultants. A deeper dive into the concept became a book, The Caregiving Guide, which includes tips on managing The 17 Caregiving Systems and our Caregiving Fatigues, those situations and experiences that wear us out.

A caregiving experience is complicated and complex. I hope the caregiving stages offer simple guidance that can help.

If you’d like to figure out where you are in your personal caregiving experience, take our stages assessment.

About Denise

Denise began helping her parents in 2004 after her father’s bladder cancer diagnosis. Her mom, who had Parkinson’s disease, died in August 2022, one year to the date after Denise’s brother died. Her father died in July 2023.

Using her personal loss to fuel a desire to help others, Denise now supports individuals managing difficult life experiences with coaching, planning, and training. She created one of the first online caregiving communities in 1996, which she managed until its sale in 2020. Named a 2017 Influencer in Aging by Next Avenue, Denise’s insights have been featured in The Wall Street Journal, The New York Times, US News & World Report, USA Today, SmartMoney.com, Time magazine and Chicago Tribune.

Denise currently develops and delivers training programs for the workplace and for individuals who want to coach family caregivers. More than 400 individuals from eight different countries have enrolled in her training programs offered through her company, The Caregiving Years Training Academy.

You can connect with Denise via her community here: CaringOurWay.com.