Dealing with Dementia in a Long-Term care setting – 10 tips for family members

Long-term care homes with their routines, protocols, and busy staff can make family members feel like Dorothy in Oz. Add in a loved one with dementia, and family members truly find themselves in a whole new universe. Here are a few tips for navigating this new world–from the perspective of a family member who has been through it.

  1. Don’t be shy. Build rapport with the administrator, care director and activations/program director and get to know the staff that work in your loved one’s unit. Long-term care homes tend to be under-staffed and everyone is always busy, but don’t let that deter you from reaching out to ask questions about your loved one’s care.
  2. Be supportive–especially now. Administrators and care directors were wary even before the pandemic; they are often caught between rules and regulations, and the day-to-day practicality of caring for so many human beings. This is a very stressful time for family members, but as the saying goes, sugar catches more flies. When you need to question something, try to ensure your approach is about working to find the best solutions.
  3. Ensure the LTC has an up-to-date list of your loved one’s medications and ask to see this list again every few months. Your loved one’s health will continue to change, just as it does for any of us. Review the meds with the charge nurse, learn when the medication is administered and discuss whether anything needs to change (at which point the nurse will seek consultation with a doctor).
  4.  If your loved one has responsive behaviours (anger and/or aggression) they may be referred to the Behavioural Support Office or BSO. I had never heard of BSO, but because I was asking so many questions about my dad’s behaviour and was so invested, they offered to refer dad to the BSO staff. This was a hugely important step towards reducing my stress–I now had someone to talk to who was invested in helping me understand what was going on with dad. Because I lived three hours away from my dad’s LTCH, the BSO in my dad’s home offered to call me every Friday with an update on dad. We became good friends.
  5. Invest time in understanding dementia. Be informed. Watch videos from Teepa Snow at TeepaSnow.com. Teepa changed my world. Read The Fix –a Toronto Star story by reporter Moira Welsh. I shared this story with my dad’s home and over time, they began to implement some of the ideas.
  6. Don’t be afraid to experiment with the new techniques you are learning. Dementia is mercurial. Some things will work with your loved one and some won’t, and often it depends on the day. Don’t be frustrated if something has great success one day but doesn’t work the next time.
  7. Offer to help. I volunteered to help with the All About Me Program at my dad’s home and would bring arts and crafts to the common area where I would work with dad and let anyone join in that wanted.
  8. Have dinner with your loved one. Most homes will allow you to join the residents at mealtime for a fee (to cover the cost of your meal). This allows you to see what residents are eating and be more engaged in ensuring your loved one’s preferences are met or being updated as things change. Or, you can simply sit with your loved one and assist them with their meal. Before my dad was moved to the secure unit, the other residents at his table absolutely loved having a bit of company at dinner!
  9. If your loved one is being moved to a secure unit, talk to them about it, even if you think they don’t understand. I regret not having done that with my dad. His dementia had progressed dramatically, and we weren’t sure he’d even notice if he was in a new room in a new unit. I didn’t realize at the time that even in the severest cases of dementia, lucidity comes and goes like a whisper in the brain. Continue to respect your loved one by always discussing changes with them even if you don’t think they understand.
  10. Accept that life is not the same in the Secure Unit and get to know the new rhythm there. Residents have a significantly higher level of acuity and require more one-on-one care. If you can, visit more often or hire a PSW to spend some extra time with your loved one. I was helping pay for dad’s care on a single income, but managed to scrape together an extra $200 a month to hire one of the PSW’s to spend a couple of hours a week with dad when she got off her shift. She became my lifeline to helping ensure my dad’s needs were being met once he could no longer speak for himself. I also worked with the care director to apply for a subsidy that will offset the cost of a private room for a resident with high intensity needs.

Final words? Engage, engage, engage in your loved one’s care! Be empathetic to staff but don’t be shy to raise issues if you need to. Bring Timbits and treats just like you might at an office–this was always a hit in my dad’s unit and helped to build rapport so that when I needed to raise a concern, it was comfortable to do so.

–Lynetter Mader, CF Volunteer

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