Care for the Caregiver of a Person Living with Dementia
When people hear the word caregiver, they often picture someone helping an aging parent or partner remember things, repeating names, managing appointments, keeping track of medications. And while those tasks are real, caring for someone with dementia is not just about memory.
It’s about a shifting relationship.
It's about:
Learning to live inside uncertainty.
Navigating changing needs and changing relationships.
Exploring boundaries… and sometimes, strengthening them.
Showing up, again and again, often without clear answers.
Staying curious… about their experience, and yours.
Practicing self-compassion when you feel like you’re falling short.
Grounding yourself with mindfulness in the midst of chaos.
Reaching for help when you’re overwhelmed.
Remembering who you are, too.
What is Dementia? More Than Memory Loss
Dementia isn’t a single disease, it’s a condition that affects how the brain works. It touches everything from memory to decision-making, from how someone perceives the world to how they move through their day.
Maybe your loved one forgets how to make tea - the steps. That’s not just memory loss. That’s a disruption in the brain’s natural rhythm for sequencing.
Maybe they hesitate to walk across a dark rug, because it looks like a hole. Or they pause at a mirror because the reflection feels unfamiliar. These misinterpretations of reality are caused by changes in the brain.
You might notice differences in how they hold objects, or avoid buttons and zippers. Hunger, heat, thirst, and pain might not register the way they used to, either.
Caring Without a Clear Translation
As a care partner, you’re often left interpreting signals, trying to respond with patience when there’s no clear roadmap. And sometimes, the way we interpret those signals comes from lenses we’ve been using for a long time. A pause or hesitation might feel like resistance. We might see stubbornness, when what’s really there is confusion or fear and safety-seeking as the brain struggles to make sense of things. Repeated questions might sound like criticism or distrust.
“Sounds like a regular marriage,” Fiona quips, in the Canadian film Away from Her (dir. Sarah Polley, 2006). Fiona, who has early-onset Alzheimer's disease, reads aloud about the progression of the disease and its impact on a care partner, particularly a spouse who is exposed to difficult behavioral and psychological symptoms. Fiona makes an ironic observation, wryly noting the parallel between the tensions in a caregiving relationship and those in a typical marriage.
Misunderstandings.
When we don’t fully understand what’s happening, it’s human to fill in the gaps. But those interpretations, often shaped by our past, our relationships, our own stress, may not always match what’s really going on. Whether you are the adult-child, spouse, or other friend or family member, our personal histories and the history of your relationship with the PLwD may complicate.
Recognizing this doesn’t mean you’ve done something wrong. It means you’re learning. It means you’re doing the hard, brave work of showing up, even when it’s messy, confusing, or painful. And it means that one of the first necessary steps to care is self-compassion.
BPSD
Most people living with dementia will, at some point, experience changes in behavior, mood, or personality. These shifts are known as BPSD: behavioral and psychological symptoms of dementia. This might look like agitation, sadness, sleep trouble, or even seeing or hearing things that aren’t there.
These symptoms aren’t “acting out.” They’re signs that the brain is struggling to interpret the world. And they’re hard, not just for the person experiencing them, but for the care partner trying to manage them.
You may find yourself constantly on alert, trying to keep the peace, redirecting frustration, calming fear, or explaininng something for the fourth or fifth time before 10 a.m.
That kind of emotional labor adds up. It takes a toll on your body, your patience, and your sense of self.
Who Are the Care Partners?
Who
Most caregivers of people living with dementia (PLwD) are close family members, often women, and usually unpaid (Losada-Baltar et al., 2024). While some say they stepped into the role by choice, others felt they had little option — shaped by family expectations, cultural values, or a lack of available services (Li & Lee, 2020). Friends and neighbors can also become caregivers, and when their support is hands-on, the stress they carry is often just as significant (Li & Lee, 2020).
How
Caregiving doesn’t usually begin all at once. It often starts small: an extra set of ears at a medical appointment, an extra set of hands at the grocery store, an extra furrowed brow helping to pay a bill. Then it becomes more: installing bath supports, managing medications, and long conversations about walkers and assessments and the emotions around decisions. This role tends to expand.
Sandwiched
For many care partners, this role doesn’t exist in isolation. You might also be raising children or teenagers or guiding emerging adults. You might be working one or more jobs or looking for work. You may be going through a difficult event like a separation, basement flood, return to post-secondary, or motor vehicle accident. Many care partners find themselves in between generations, balancing the needs of parents and children at the same time they are living life in all it’s ups and downs.
What Stress Really Looks Like
Care partners of people living with dementia face stress and risk of poor mental and physical health. It’s not just the physical work, it’s the emotional load, the internal conflict and divided feelings, and the grief that moves in and out like the tide.
It’s the feeling of being pulled in too many directions with not enough support.
Sometimes that stress shows up as exhaustion or body pain. Sometimes it shows up as irritability, depression, guilt, shame, and sleepless nights. Sometimes it feels like tension, numbness or exhaustion, and going through the motions because it feels like there’s no room to stop.
Many care partners don't speak up. They minimize what they’re doing. They assume stress is just part of the deal.
But naming the weight doesn't mean you're failing.
How do we Care for the Caregivers?
There’s no shortage of books, articles, and podcasts on caregiving. This post is simply an invitation - a way to begin noticing the care you might need, and to consider support that’s specific to your situation.
You’ll find more ahead in the 3-part blog series: Care for the Caregiver (PLwD), as well as encouragement to connect with your local dementia organizations or online support communities. Because you don’t have to do this alone.
Personhood is the recognition that every individual has inherent value, dignity, and identity, no matter their age, ability, or cognitive state.
As you keep showing up, you are encouraged to keep in mind and body, meditations or prayers:
Personhood, theirs and yours.
Final Thoughts
Caring for someone with dementia asks more from us than most people realize. It’s layered. It’s tiring. And it’s full of moments that test and reveal who we are, moments we can also use to explore needs and grow.
This post is not about quick fixes or pretending it’s all meaningful. It’s about telling the truth, that caregiving is complex, that it stretches us, and that it deserves support, recognition, and care.
Including care for you.
Explore:
Care for the Caregiver - Ambivalence
Care for the Caregiver - Grief
Care for the Caregiver - Meaning
A Note on This Post and References
This post is for general educational purposes only and does not constitute psychological advice or therapy. It is not intended to replace personalized care from a licensed mental health professional in Canada. If you’re feeling overwhelmed, speaking with a trained professional may help you better navigate this experience and protect your own well-being.
Li, L., & Lee, Y. (2020). Caregiving choice and caregiver-receiver relation: Effects on psychological well-being of family caregivers in Canada. Canadian Journal on Aging, 39(4), 634–646. https://doi.org/10.1017/S0714980819000825
Losada-Baltar, A., Mausbach, B. T., Márquez-González, M., Romero-Moreno, R., von Känel, R., Jiménez-Gonzalo, L., Fernandes-Pires, J. A., Barrera-Caballero, S., Martín-María, N., Huertas-Domingo, C., & Olazarán, J. (2024). Longitudinal associations in dementia family caregivers of ambivalent feelings and disruptive behaviors with C-reactive protein, interleukin-6, and D-dimer. Health Psychology, 43(11), 833–841. https://doi.org/10.1037/hea0001352
关于 Stellocare
本篇文章来自 Stellocare，加拿大值得信赖的心理健康专业名录。我们连结通过严格审核的持牌治疗师、社工与心理学家，为您带来真实可靠的专业资讯。
本文作者为 Penelope Waller Ulmer，是我们平台上的认证治疗师。您可以在下方进一步了解他／她的专业与治疗风格。
