Words of Wisdom From Dementia Caregivers: What Every Family Caregiver Needs to Know
Are you caring for a family member or friend with Alzheimer’s disease or another type of dementia? If so, you’re not alone; you are part of a growing community of informal (that is, unpaid) dementia caregivers nationwide.
Dementia is a general term for loss of memory, language, problem-solving, and other thinking abilities that are severe enough to interfere with daily life. According to the Alzheimer's Association's Facts and Figures for 2022, more than 11 million Americans provide informal care for people with dementia, and almost a third (30%) of dementia caregivers are age 65 or older.
Despite significant challenges, such as health and economic strain, positive signs indicate that families and friends are becoming better equipped to manage loved ones’ care.
Acknowledging that a diverse community of experienced family caregivers hold valuable expertise that could help others—in partnership with the National Association of State Veterans Homes and other veterans’ groups—I asked family caregivers in the Long Island State Veterans Home the following:
“If your friend were beginning their own dementia care journey, what are the most important things you would share with your friend?”
Let’s explore some of the caregivers’ insights to appreciate what experts believe every dementia caregiver needs to know.
Dementia Caregiving Differs from Other Types of Caregiving
“When you’re young, you have no idea that this can happen.”
Dementia caregiving poses unique challenges. Family members and friends in dementia care often provide more assistance with day-to-day care than in non-dementia care.
Family caregivers often help loved ones deal with upset related to losses in judgment, orientation, problem-solving, and other abilities beyond just memory loss. Dementia affects the person’s personality and behavior; these behavioral symptoms of dementia can be among the most challenging.
Knowledge is Power for Caregivers
“I’m finding it a lot easier since I’ve been going to these symposiums. I’ve been taking out books…and now that I understand dementia, it makes a big difference in how I handle it.”
Knowledge is power in understanding dementia and improving life for everyone involved. As caregivers learn about the disease, they can better help loved ones and themselves thrive beyond the diagnosis.
Educational interventions include information about:
Types of dementia, causes, and treatments
Common symptoms associated with brain changes
Care strategies to maximize strengths and abilities preserved by dementia
Activity modifications to make participation easier and more satisfying
Environmental designs to facilitate function and safety
The Alzheimer’s Association has many educational programs for family caregivers and people living with dementia. The Alzheimer Society of Canada provides resources to help children and teens, among others, to learn about and cope with dementia.
Dementia Impairs Communication, but Effective Strategies Exist
“We were arguing…but that was before I understood the disease. Once you understand, it’s a lot better….”
Even in early dementia stages, communication between caregivers and those they support is difficult, as the person’s brain changes in areas of memory, language, judgement, and impulse control.
The good news is that caregivers can adopt new communication strategies for common communication breakdowns—leaning into the person’s cognitive strengths, not just losses. Strategies include:
Approaching the person without startling
Speaking and moving slowly
Maintaining a friendly, respectful voice tone
Using fewer words in questions and instructions
Pairing instructions with visual cues (gestures, objects, facial expressions)
Using more automatic rhythmic language (social chit-chat, music, prayer)
Retaining humor and flexibility
Validating feelings (empathizing)
Redirecting conversations without arguing
“It took me a while to learn. Believe me, we’ve had arguments, but through my journey, I’ve learned how to communicate with him.”
It’s understandable that changing communication habits takes time. Afterall, family communication is rooted in decades-long habits, roles, and routines, but with practice, caregivers can improve interactions with loved ones. Read more tips for communicating with people living with dementia
Understanding the Disease Progression Helps Caregivers Match the Right Care at the Right Time
“The hardest part is adjusting yourself and your life. It’s a new routine.”
“I didn’t really understand until I could see that brain with dementia and the progression of the disease. Nobody had ever explained it to me that way; since then, I can understand it.”
Types of dementia progress in different patterns and at distinct rates, but caregivers express a common concern: things keep changing. Each stage brings new challenges, but caregivers who understand the dementia timeline can redesign plans as needs change, accessing the right support at the right time.
Dementia Care Takes a Village
“You absolutely need a support group.”
They are right. In fact, people with dementia often have larger networks of loved ones involved in their care than those without dementia, and those caregivers also need professional partners.
Many caregivers (67 percent) report their main motivation in providing care is to help their loved one live at home longer. However, such family caregivers may lack knowledge of non-medical home care or extensive resources available from these homecare agencies to help achieve this goal.
An adult daycare program can provide a compassionate and economical choice to help older adults needing daytime assistance. This allows family caregivers to work, handle personal business, or rest while their relative is safe and engaged in the community.
Additionally, many technologies exist to support caregivers, including several apps to help caregivers coordinate help from family, friends, and pros.
A newer app, not found at this link, is Give In Kind, designed to help families support anyone, anywhere. Unlike the others, which are perfectly suitable for coordinating calendars and medical services, the Give in Kind website offers the most robust social support options and education for diverse caregiving situations.
Self-Care Is Vital for Dementia Caregivers
“It’s not easy, but you must try to take care of yourself, even though that’s the hardest thing to do, because you’re busy running for them.”
Despite the challenges, caregivers often explain that love, duty, and commitment motivated them into this role. Therefore, it’s vital for caregivers to practice self-care to sustain such a meaningful role. Check out these resources from Booming Encore to reduce stress, maintain your brain, and age positively.
To hear all of what the caregivers had to share, here is the tape of them sharing their Words of Wisdom:
About the Author:
Esteemed occupational therapist and researcher Heather McKay, Ph.D., OTR/L, collaborates with ComForCare Home Care on dementia care training program DementiaWise®. The program is designed to help dementia caregivers adapt to challenges and improve the quality of life, safety, and emotional well-being of individuals living with dementia and themselves. Together, Heather and ComForCare educate individuals concerned about their own brain health, home care teams, family caregivers, and community partners.
