How to Support Caregivers as Dementia Progresses: A Journey-Informed Approach

Updated June 18, 2025

Dementia is a progressive, long-term disease that not only alters the life of the person diagnosed, but also transforms the life of the caregiver. As the disease evolves, so too does the caregiving experience. The needs, emotions, and responsibilities of someone new to caregiving differ greatly from those of someone providing intensive support years into the diagnosis.

Carallel’s Care Advocates are experts trained to meet caregivers where they are in their journey. While no two caregiving experiences are the same, we recognize that common themes emerge as dementia progresses. By appreciating these themes — often associated with caregiving “stages” — we tailor support to help caregivers navigate challenges with confidence and clarity.

Through personalized plans, curated resources, evidence-based interventions, and empathetic guidance, our program grows with each caregiver’s journey and delivers measurable impact for the caregiver, the care recipient, and the health plan.

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Stage 1: Awareness
Processing the diagnosis and preparing for what’s ahead

This period often begins shortly after a dementia diagnosis, as caregivers begin to understand what it means for their loved one and for themselves. They’re looking for information, guidance, and tools to prepare for medical, emotional, and financial implications.

Carallel helps set expectations based on disease progression, provides broad education, and equips caregivers to ask the right questions at medical visits. We also encourage proactive steps like documenting wishes and care preferences while it’s still possible.

“I’m determined to do all that I can to do this right and my attitude is, why not try?”
— Rochelle Haines, wife and caregiver to Barry, in early-stage dementia

During this time, Carallel’s support helps reduce friction within families and care teams, promotes preventive care use, and improves satisfaction and caregiver resilience.

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Stage 2: Unfolding Responsibility
Daily demands grow, and so does caregiver stress

As symptoms progress, caregivers often find themselves taking on more tasks — from managing medications to dealing with changes in behavior or personality. Stress levels can increase, and many feel overwhelmed.

Carallel supports caregivers by helping them advocate for their loved one in healthcare settings, identify and access local resources, plan for respite care, and make home modifications to improve safety.

These efforts decrease fall risk, support earlier detection of medical issues, and reduce caregiver burnout. Plans benefit from improved health outcomes and more efficient use of benefits and community resources.

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Stage 3: Increasing Care Demands
When caregiving can feel all-consuming

In this stage, what was once theoretical is a daily challenge. Dementia caregiving often means dealing with increasingly resistant and sometimes socially inappropriate behavior, and wandering may become more common. Often the care recipient can no longer be left alone, even for short periods of time. 

Carallel steps in with evidence-based strategies to manage behaviors, connect caregivers to palliative care and financial assistance, and address practical concerns like incontinence and home safety. We also help caregivers develop their own stress management skills.

The result: greater caregiver resilience, improved care adherence, and reduced emergency department visits — all while enabling families to continue caring for loved ones at home.

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Stage 4: End of Life
Navigating the hardest part of the journey

The end-of-life stage is fraught with emotion and logistics. Carallel helps caregivers know what to expect, explore anticipatory grief and available support, discuss legal topics like how to understand and follow an advance care plan, and talk about what happens after death. This makes it easier for caregivers to manage a crisis event, understand and move through their grief, and receive financial assistance for burial, if eligible.

During the most difficult moments, no caregiver should feel alone. Carallel is with caregivers every step of the journey. 

Let’s support dementia and Alzheimer’s caregivers, this month and every month.

Contact us today to learn how to partner to improve caregiver and member/patient experience.

More on Dementia Caregiving
The ‘Invisible Second Patient’: Understanding the Role of Dementia Caregivers
Caregiver Diaries: Spousal Caregiving and Dementia