Caring for someone with dementia is not like caring for someone with other neurological diseases, such as advanced multiple sclerosis, organ failure, or end-stage chronic obstructive pulmonary disease (COPD). It’s more like supporting someone lost in an unfamiliar world that keeps changing. It is different, often more emotional, more tiring, and more complicated. Why? Because dementia doesn’t just affect memory. It changes how a person thinks, feels, communicates, and behaves. It affects relationships, routines, and the way we connect.
Understanding the full impact of dementia
When people hear the word “dementia”, they often think of memory loss. While memory is part of it, dementia also affects things such as judgement, understanding, mood, and personality. Someone who used to be calm and organised might now get confused, angry, or withdrawn. This can be very hard to understand, especially if you knew the person before dementia.
The person you knew seems to change
One of the hardest parts of caring for someone with dementia is watching them change. The person you once had deep conversations with may now struggle to find words. They might forget important things, such as where they live or who their family members are. Some people undergo a personality change so profound that they seem unrecognisable, and in some cases, they may become aggressive or violent. This can be heartbreaking and frustrating. It can feel like you’re losing them bit by bit, even though they are still right in front of you.
Communication becomes harder
As dementia progresses, people can have trouble following conversations or understanding instructions. This makes everyday tasks more challenging. You may need to repeat things, speak more slowly, or use simple words. Sometimes, no matter how carefully you speak, the person may still not understand, and that can feel exhausting. I’ve supported carers in this situation by helping them find ways to manage their frustration and grief—such as teaching grounding techniques and encouraging moments of rest—so they can maintain their well-being while continuing to care with patience and compassion.
Emotions run high
People with dementia often feel scared, confused, or upset, especially if they realise something is wrong but can’t explain it. They might lash out, cry, or shut down. And carers, who are often family members or close friends, may feel helpless, sad, or even angry. These emotional ups and downs are completely normal, but they make caregiving very different from other types of care.
Routine matters more than ever
Dementia can make the world feel unfamiliar and frightening. That’s why routine is so important. Knowing what to expect helps people with dementia feel safer. It also helps reduce confusion and anxiety. But sticking to a routine can be difficult for carers, especially when life gets busy or unpredictable. One of my clients cares for her husband, who has moderate dementia. She told me that when their morning routine is disrupted, such as when a tradesperson arrives early or she has a medical appointment, he becomes agitated and withdrawn for the rest of the day. But when they follow their usual pattern of breakfast, a walk, and reading the newspaper together, he remains much calmer and more engaged.
It’s not just physical, it’s personal
Caring for someone with dementia isn’t just about helping them get dressed or take medicine. It’s about holding on to who they are. It’s about finding moments of joy, even in the middle of confusion. It’s about patience, kindness, and understanding, even when things are really tough. In one session, a carer spoke about how her mother, who has advanced dementia, no longer remembers her name, but still lights up when they sing old folk songs together. For a few minutes, they laugh and connect, just like they used to. The carer told me that these moments remind her that her mother is still there, beneath the confusion. It’s not always easy, but those brief glimpses of joy help her keep going.
You’re not alone
If you’re caring for someone with dementia, remember that you’re not alone. Many others are walking a similar path. Sometimes, simply having someone to talk to who understands the challenges can make all the difference. That’s one reason I offer dementia counselling, to support carers (like you?) with understanding, practical guidance, and a listening ear, when you need it most.
Jurgen Schwarz
June 2025