The Story of a Non-familial Care Partner

July 25, 2025

by Monique Beneteau, CCSMH Staff

 

 

 

“Why do you keep helping her? You don’t have to, you know…it’s not like you’re her family.”

 

 

 

[The views expressed in this story are those solely of the author and do not necessarily reflect those of the CCSMH.]

 

Jane* came into my life ten years ago when I started volunteering with an animal welfare group. The first time I met Jane was in her apartment. She was fostering four kittens, two of whom I adopted and are still with me.

 

Then, in 2016, Jane, with her three cats and miniature poodle, moved into my basement for what was to be a temporary arrangement but morphed into six years. (Maybe some other time, we can talk about the appalling state of our housing situation for low-income older adults.) Initially, we were housemates living independent lives but also spending lots of time together fostering kittens—probably over 100 over three years! It was hard work but so much fun too.

 

When COVID hit, I spent more time at home and started to notice some things that escaped my attention before. Jane had COPD but by mid-2021, I realized that something else was going on. That’s when our relationship began to shift. After much prompting by me, Jane agreed to be assessed, and was diagnosed with dementia in November that year. Gradually, even more caregiving responsibilities fell into my lap—mostly because no one else was doing it. I was managing medications, finances and her appointment calendar, accompanying Jane to medical appointments, and serving as her memory and voice as her COPD and dementia progressed. I spent a lot of time with Jane and she trusted me. She was extremely private, but I became her confidante.

 

In 2022, it became clear that Jane needed more care than I and the occasional PSWs could provide. As I pushed for a long-term care home bed for Jane, I tried to balance Jane’s needs and wishes with my own need to remove myself as her primary caregiver. Her sons would listen to my concerns but I don’t think they wanted to believe it was that bad; none of them were in a position to be able to support her.

 

Jane moved to a long-term care (LTC) home that September and I continued to support her, visiting three times a week, taking her to medical appointments and, on two occasions, sitting with her in the emergency department. My interactions with the nursing staff at the LTC were strained at first because I wasn’t related to Jane and they refused to share information with me. This was made much easier after her son (power of attorney) gave the nursing staff written permission indicating they could discuss Jane’s health care with me. Janes’ son relied on me too–to flag issues and problem-solve since I was the one who was seeing him mom frequently.

 

I was at the LTC home so much that many of the staff assumed I was her daughter because, as they would say to me, “if you’re not related to her, why are you doing this?” Well, I wanted to make sure that she was being properly cared for–something I hope someone will do for me down the road. I also joined the Family Council at the home. I was the only non-family member. I found great support from this group and, together, we advocated for better care, not just for our loved ones but for all the residents at the home.

 

Jane had lived for years with depression and anxiety. Shortly after moving to LTC, she also experienced dementia-related paranoia. In the last year, my care focused on providing emotional stability and support and to alleviate her isolation and loneliness.

 

Jane died at the end of June. It was the COPD that ended her life. While inevitable, it was still a shock.

 

I’ve learned a lot from my time with Jane…about kitten care, about how long a canister of oxygen lasts during a power outage, and that some people can never have enough Chips Ahoy! Chewy Chocolate Chip cookies in the cupboard.

 

Seriously though, I’ve learned A LOT about who I want to be in the world and about what compassion and “being in the moment” really means when you’re with someone living with dementia.

 

The extra hurdles of a non-familial care partner

Was Jane my friend? As I reflect on this chapter in my life, I’ve struggled with how to describe or name my relationship with Jane. I don’t think we were friends in the traditional sense. We weren’t related but I was closer to her than her family. In the last six months, Jane couldn’t always remember my name so she would introduce me as her daughter because it probably most closely represented what I meant to her.

 

It would have certainly been easier if I had been her daughter. These were some of the extra hurdles I encountered because I wasn’t related to Jane:

  • Health care, legal and financial people didn’t want to share information with me. They would listen to what I would say but they wouldn’t loop me in unless the power of attorney said it was okay. Throw in a revolving door of new staff in our health care system, and I had the same conversation about my role over and over again.
  • People made assumptions that I was related because who else would do this? Sometimes I would try to explain our relationship but it got tiring. If I said we weren’t related, some people would give me a look that I can only describe as “suspicion.”
  • While Jane put all her trust in me, that trust placed me in a very vulnerable situation (e.g., handling finances, supporting decision-making). I knew it would be easier for me to walk away and not provide these supports, but would it have been the ‘right’ thing to do?
  • Because Jane had three sons who played much less supportive roles, I walked a tightrope, trying to advocate while not overstepping. As Jane’s health declined, her son (POA) began to see me as an ally and supported me when I suggested certain strategies or actions. Even so, they were still content to let me do a lot of the heavy lifting. When death was imminent, the sons stepped in. I felt cast aside until they needed information–I was the knowledge keeper on Jane’s health and life.
  • When Jane died, people didn’t think I would be as profoundly impacted by the loss. I am.

 

What Can We Do?

I recently read a journal article about the caregiving experiences of people who are not immediate family. It’s the first time that I really felt “seen.”  In the U.S., a third of people living with dementia live alone. An old Canadian study, published in 1999, showed the same thing. If that’s the case, and with our aging population, it’s imperative that we look at the role of non-familial informal caregivers.

From my experience with Jane, and my knowledge gained from my work with the CCSMH, I’ve created a list of things that we can do depending on what our role is.

 

FOR THE CCSMH

DONE:

Would like to do:

 

FOR CLINICIANS AND ALLIED HEALTH PROFESSIONALS

  • Learn more about the impacts of caregiving on non-familial care partners. This recently published article is a good place to start:  Lowers, J. et al. (2025). “How do you take that much time for one person’s life?” Experiences of dementia caregivers who are not immediate family. J Appl Gerontol., 44(1): 166-175. https://doi.org/10.1177/07334648241265197
  • Consider doing the training offered by Caregiver-Centered Care (University of Alberta).
  • Consider what changes need to happen within the system that would acknowledge and value the contribution made by informal care partners (both familial and non-familial). Use your position and expertise to move public policy forward.
  • Advocate to public policy decision-makers asking for changes that make person-centered care and caregiver-centered care mandatory. Get your professional associations to do so too.
  • When working with a patient, get clarity about who their informal care partner(s) are and formally document the patient’s (or POA’s) consent that you can speak with them.
  • If you work in long-term care, take some time to speak to the front-line staff about what changes are needed to ensure that informal care partners are part of the team. Then, work with the administration to explore those changes.
  • Familiarize yourself with the CSA Standard 2004:24 that addresses mental health in long-term care.
  • If you haven’t yet, familiarize yourself with the clinical guidelines on Behavioural and Psychological Symptoms of Dementia (BPSD).
  • Tell your colleagues about the resources in this blog post.

 

FOR OLDER ADULTS WITH DEMENTIA

  • Find an ally (family member, friend) who will walk beside you on your dementia journey. Find someone who won’t be shy about advocating for your needs.
  • Consider getting your affairs in order while you can. That is, update your will, select a power of attorney for health and finances and, if you can, make your funeral arrangements and prepay them. Talk with your power of attorney/ally about your goals, values and wishes.
  • Learn what you can about the disease by contacting your local Alzheimer Society or checking out ALZeducate and the Behaviours in Dementia Toolkit

 

FOR INFORMAL CARE PARTNERS (FAMILIAL AND NON-FAMILIAL)

  • First, whatever you’re doing, know that you’re doing the best that you can. Cut yourself some slack.
  • Check out the Behaviours in Dementia Toolkit. You can search by keyword (e.g., paranoia, anger) and amazing resources will be provided.
  • If you haven’t yet, check out ALZeducate (Alzheimer Society of Ontario).
  • Familiarize yourself with the CSA 2004:24 Standard on mental health in long-term care (it’s free).
  • If your loved one is in long-term care, there may be a family council. Consider joining it.
  • Find those people in your life who will support you and maintain that circle. You know those people–the ones who will listen to you, sometimes step in to help (people are willing, they just need to be asked), and will encourage you to step out of the caregiving role every so often.
  • Self-care. You know the airplane message of putting the oxygen on yourself before helping someone else? That.

 

FOR CAREGIVER GROUPS/ASSOCIATIONS

  • Try to identify how many informal care partners in your circle are not related to the person they support. Create a special program or support group for them.
  • Create resources for non-familial care partners addressing some of the most common concerns and how to mitigate potential risks (e.g., handling finances, sharing personal health information).
  • Advocate for public policies that make informal non-familial care partners eligible for resources and supports that other familial care partners can get.

 

FOR EVERYONE

  • Learn about all the ways you can try to prevent dementia.
  • The Defy Dementia podcast through Baycrest is fabulous. I’ve listened to every episode and will continue to do so!
  • I recently learned about BrainHealthPro and it looks very interesting. The groups behind it are the Alzheimer Society, the Canadian Consortium on Neurodegeneration in Aging (CCNA), and the Canadian Institutes of Health Research (CIHR). All highly reputable organizations.

 

*Name has been changed.