When Someone You Love Is Diagnosed With Dementia: Advice From Those Who’ve Been There

When a loved one is diagnosed with dementia, life can suddenly feel uncertain, overwhelming, and unfamiliar. Many people describe it as stepping onto shifting ground—just when you find your footing, things change again. As one loving daughter, Jen, put it simply and honestly: be prepared that things never stay the same for long.

The following reflections come from wonderful daughters who have walked this road with their mothers (and sometimes fathers, too). They are all expert caregivers. Their advice isn’t about doing everything perfectly—it’s about staying grounded, connected, and supported as you move forward.

Meet Them Where They Are

When I started receiving responses to my petitions for advice for those new to the world of dementia, I realized that these daughters shared the same core truth: your loved one’s world is changing, and the most compassionate thing you can do is meet them inside their world.

Vivian’s advice reminds us to be mindful of how we show up. If we are annoyed, rushed, or impatient, our loved ones often mirror that energy. Vivian – whose mother has dementia and lives in memory care, says that calm, warmth, and reassurance go a long way—even when words no longer do.

Jennifer’s mom, Susie, who recently passed away from dementia, echoed this, sharing that her mother responded far more to tone and emotion than to the actual content of conversations. Correcting facts didn’t matter. What mattered was love, positivity, and intention. Jennifer always greeted her mom with enthusiasm and with buoyant, positive energy – often convincing her mom that it was the best day ever. Susie sometimes woke up not wanting to do anything, but Jennifer’s loving, happy energy immediately engaged Susie and within minutes she was ready to go out for a coffee or a chat. 

When possible, be honest and open. Early on, Jennifer found that talking openly about fears, changes, and frustrations helped build trust. Feeling included and respected mattered deeply, even as abilities shifted.

I would also suggest that giving our loved ones with dementia choices, when choices are possible, contributes to a sense of dignity and worth. Allow your loved one to choose the footwear they want to wear for a walk, or whether they want to eat now, or later. 

Get Support—Early and Often

One of the strongest messages from the family caregivers I work with is this: don’t try to do this alone.

Susan encourages reaching out as early as possible—to professionals, dementia support groups, and community networks. The more you understand what resources exist, the more supported you’ll feel when you truly need them. Some communities even offer activity groups where people with dementia can engage socially while caregivers connect with others who understand. 

If you are the main caregiver, your siblings or other family members may not realize the extent of the burden you carry. We wish people would intuitively pick up on our stress, or offer to help, but that doesn’t always happen. It doesn’t hurt to state what you need. If you can, try to ask people for the help you know they are good at. You probably won’t ask your brother to pick out accessible, soft pajamas for your mom, but maybe he could stock the fridge in her suite with juices and snacks?

Susan also strongly recommends bringing in help sooner than feels necessary—even if it’s just an hour or two a week. It might be easier for a parent with dementia to accept that you met a new friend that you are having over to visit, rather than saying that you have hired a care companion. In my work, I often introduce myself as a friend or a neighbour. 

Care for Yourself Without Guilt

Caregiving is deeply meaningful—and deeply exhausting. Booking time for yourself isn’t selfish; it’s essential.

Whether it’s a massage, a fitness class, a walk with a friend, or a regular coffee date, those moments of respite help keep you steady. Vivian beautifully summed it up: the best gift is your time—and that includes time given to yourself. Vivian is someone that seems to have a wonderful balance of enjoying her personal interests and spending quality time with her mom, who lives in a supportive memory care environment. 

You cannot pour from an empty cup, and taking care of yourself is part of taking care of your loved one.

Make Life Easier With Simple Tools

Practical adjustments can reduce stress for everyone. Susan suggests labeling spaces with sticky notes and using a whiteboard in visible areas to list names, contacts, and daily reminders. While spoken instructions may be forgotten, written ones can be referred to again and again—sometimes dozens of times a day.

These tools aren’t about giving up independence; they’re about supporting it. For myself, I have also found that leaving positive messages for people with dementia that can still read has been very soothing. I write messages such as, “Good Morning! You are at Happy Bee Manor. Your family knows where you are and they will come and see you soon. They love you so much.”

Caralyn lives in a different province from her mom, who has advanced dementia. Her advice is to have a special journal for documenting medical appointments and their outcomes, laboratory and other tests, falls or other adverse events, and changes in behaviour. When Caralyn is in contact with any new health professional (for example, over the phone with a hospital attending physician when her mom recently had a fall), she is easily able to provide pertinent history to the physician, which aids in her mom’s care. Journaling can also be helpful in recording observations of care companions or memory care staff. 

Plan Ahead, Even If It Feels Too Soon

Planning for the future can feel uncomfortable, even frightening—but family caregivers I have worked with consistently wish they had started earlier.

Research care homes before there’s urgency. Visit, ask questions, and learn what’s available and affordable while you still have the emotional energy to do so. Make a chart and rank the residences you see as you do tours. So many of them have similar names and features it could be challenging to remember which one you liked best, months later. It can also be helpful to tour facilities with a trusted friend who can provide objective opinions on the pros and cons of each residence. 

If your loved one with dementia lives at home, I suggest getting an Occupational Therapy assessment. These assessments can identify hazards and future supports that your loved one will need. Getting these supports sooner rather than later can mean the difference between safety and potentially serious accidents in the home. 

Speaking with professionals such as a death doula to get a sense of what’s to come can minimize the shock of physical and emotional changes with your loved one. Knowing the general pathway and outcomes of a dementia diagnosis (and there are many different kinds of dementia each with their own, unique traits) can mean that there is less alarm and panic when those traits are manifesting for the first time. 

 Also, organizing administrative matters early, such as a Personal Directive, Power of Attorney, Will and prepaid funeral and aftercare, can ease stress later, when decisions become harder.

As Susan told me, it may feel premature—but often, it isn’t.

Above All, Lead With Love

Dementia changes many things, but it doesn’t erase the need for dignity, connection, and kindness. Even when memories fade or words no longer make sense, emotions remain. I like to tell family members, friends and care companions of those living with dementia, that a person may not remember your name or your face, but they will most certainly remember how you made them feel. 

These amazing daughters that I know remind us that showing up with warmth and presence matters more than getting things “right” all the time. I asked these wonderful women, specifically, for their advice, because every one of them met or continues to meet their parents where they are, with tremendous patience and acceptance. I am a huge fan of all of them and have learned a great deal from observing the way they met their parents with love, cheer and acceptance. 

The journey is not easy—but it can still be filled with moments of tenderness, meaning, and deep human connection. If you are facing dementia for the first time, I can help. Contact me to book a compassionate and helpful consultation.