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What My Experience Supporting and Advising Dementia Caregivers Has Taught Me About the Challenges of the Disease

Felicia Greenfield


  • Dementia Caregiving Overview: A clinical social worker shares experiences supporting dementia caregivers, offering insights into challenges and coping strategies.
  • Stages of Dementia: The disease progresses through early (mild), middle (moderate), and late stages, impacting cognition, function, and behavior.
  • Challenges in Moderate Stage: Caregivers face difficulties as behaviors become challenging; environmental changes, support, and professional advice are crucial.
What My Experience Supporting and Advising Dementia Caregivers Has Taught Me About the Challenges of the Disease

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I am a licensed clinical social worker who supports dementia caregivers, and I’m grateful for all I’ve learned from the people in my care. Part of my work is providing psychoeducation about the research on dementia and caregiving. As a result of that research I have learned to provide space for my clients to process their feelings as they adjust to changes in their loved ones and in their relationships. Following are stories of how families I work with cope with and manage the ongoing challenges they face as dementia progresses through its stages. As a result of my experiences reflected in these stories, I have continued to learn how to offer new strategies for problem-solving and optimizing care.

The progression of dementia happens in stages, and these stages are typically broken down by early, or mild, middle, or moderate, and late or final. To define an individual stage people in my profession take into consideration three factors: the person’s cognition, their ability to function and their behavior.

Cognition refers to memory, the ability to speak and comprehend the speech of others, recognize friends and family and exercise good judgment. Function is the ability to perform day-to-day activities including personal care and social roles. These activities are usually divided into two groups: basic activities of daily living, which include feeding, dressing, grooming, toileting and bathing; and what professionals call instrumental activities of daily living, such as using a phone, preparing a meal, maintaining a home and managing money and medications. Finally, behavior refers to how a person acts in social situations and at home.

Generally speaking, people in the early or mild stages of dementia have less ability to function independently and perform complex tasks but can still perform basic activities of daily living. Cognitively, someone with mild dementia may have trouble learning new things or word finding, and they might have minor departures from good judgment. Trained professionals expect to see minor personality changes, such as being less socially engaged.

In the middle or moderate stage of dementia, function remains mostly intact, but people in this stage may need some reminders or help with basic and instrumental activities of daily living. Cognitively, trained professionals notice significant memory loss and disorientation. Conversations are often disorganized, judgment is impaired and attention span becomes shorter. In this stage, behaviors can become challenging for caregivers to manage. Trained professionals sometimes observe psychosis (loss of contact with external reality) in the form of hallucinations or delusions. Some dementia patients in this moderate stage wander in their surroundings or beyond. They may often appear angry or agitated. Some sleep more during the day or have sleep problems at night.

This stage can be confusing for caregivers because the person living with dementia still outwardly appears normal in appearance, and they’re able to function well in many ways. Caregiving becomes more difficult due to these challenging behaviors. Trained professionals can coach caregivers to become behavioral detectives to get at the root of the problem. Often making changes to the environment can eliminate triggers and prevent some behaviors. For example, a patient I’ll call Sam, who was weight-conscious, wouldn’t eat because he believed that his wife gave him too much food. Her ingenious solution was to use larger plates to make the meals look smaller. When adapting the environment doesn’t work, medications may be needed to help calm or relax the person with dementia.

In this moderate stage, caregivers may benefit from more support in the form of either added in-home care or care outside the home. As one caregiver told me, just as she got a handle on one set of challenges, she had to adjust to another “new normal.” A family I worked with moved their loved one to a care facility when he began to wander out of the house alone, sometimes driving and getting lost in the middle of the night. Another caregiver, Patricia, felt her husband needed more care than she could provide when he became more agitated and started urinating in random places around their house. It is not unusual in my experience for caregivers to feel that their care is inadequate, especially when the challenges and “new normal” become more complicated and difficult. Caregivers in this situation should reach out for help from trained professionals for advice regarding possible solutions to these feelings. When Colleen’s husband, James, got expelled from an adult day center for violent behavior, she felt she couldn’t continue caring for him at home alone. In this instance, she emotionally could not bear the separation from her husband, whom she didn’t think was receiving the level of care she felt she could provide with in-home care. James returned home and Colleen hired 24-hour care, which felt like the right option for them.

As the disease progresses to the late stage, people with dementia can no longer function independently. Cognitively, only fragments of memory remain, language is significantly impaired, and they may no longer recognize friends or family. The individual can become restless and unable to focus and be difficult to reason with or redirect. Their appearance can change, and they typically are unable to attend social functions, often because of impulsivity.

In my experience, late stage dementia comes on faster for people residing in care facilities. It is hard to know why this is, but I suspect that there are limits to what facility care can provide. Being in unfamiliar surroundings with caregivers who lack close personal ties to the patient may play a role. Staff may be stretched thin, rendering them unable to give undivided attention to all of the residents. Families who visit often and develop relationships with paid caregivers and administration are often able to advocate for more care for their loved one, and some families choose to hire private-duty aids to supplement the residential care. Of course, this can be cost-prohibitive for many. Some caregivers request a hospice assessment in the final stage. If eligible for this level of care, the patient and family have access to a team of nurses, social workers, and chaplains to support them while their loved one receives comfort care in this final stage of dementia.

Through all three stages, dementia changes the lives of the entire family. As the disease progresses, so do the strains on the caregiver, which can put his or her own health at risk. Caregivers observing and practicing self-care is critical: People are of little use to others without their own physical and emotional health intact. If you asked the caregivers I’ve supported, I think they’d confirm that the reason they can be strong, resilient, and compassionate in their care giving for dementia patients is that they’ve figured out how to care for themselves. They have done this by educating themselves about the course of this illness, found time to exercise and meditate, and joined support groups and stayed connected to others who have experience with this disease Often they didn’t ask for this situation, but they’ve worked hard on acceptance, and with the help of others, they’ve been able to endure and be effective over the course of the long journey of dementia caregiving.

The stories of people I support share themes of resilience and newfound sources of purpose and meaning. Finding meaning in the face of loss can propel you forward, sustain you, and provide a sense of hope, even in the darkest times.