Advocating for a Loved One Living with Dementia
in Long-term Care

Communication with staff

• Keep a notebook of observations and communications with staff with dates. Follow up in-person or phone communication with email so that you have a written record.

• Show your appreciation to staff regularly. 

• Give staff lists of preferences and history/bio to help them get to know your loved one as a real person. Consider a laminated card on the door/bedside/bathroom with most important things for staff to know.

• Don’t let little problems turn into big ones. Keep open communication going with staff and administration.

Things you can ask staff for and about 

• • Activities/calendar (request activities of particular interest to your person)

  • Care plan (review it regularly for revision as your person’s needs change)*

  • MAR (Medication Administration Record)--especially if your person has medications that they receive PRN (as needed)*

  • Copies of any nursing notes on your loved one*

  • Anecdotally, how is my loved one eating? Sleeping? What activities do they show an interest in? Whom do they like to spend time with? What is their mood/energy level like?

  • Ask staff if there’s anything you can do or supply that will make it easier for them to help your loved one thrive.

*(with POA/guardian/healthcare agent designation)

Things to have and bring

• • Label everything with your loved one’s name

  • Use technology supports: Apple TV, Echo Show, Fitbit

  • Tributes written by friends/family, photo books, meaningful activities, weighted stuffed animals/blankets, fidget toys and blankets, favorite snacks

Connecting and getting support from others

• • Other visitors—leave a notebook for them to share what they did and how it was and date OR have them text you after each visit, along with answers to guiding questions you may have given them (What was my person doing when you arrived? What staff were around and what were they doing? What was my person’s mood/energy level?)

  • Connect with other families, share observations, look out for each others’ people, consider forming a family council

  • Consider using doctors who are not affiliated with the facility for enhanced objectivity.

  • Consider PT/OT/speech therapy, if it’s affordable for you

  • Accept help from friends! Ask them to visit your loved one.

Visiting

• • Try visiting at different times of day, if possible, to see how your loved one’s mood and energy vary, as well as to meet staff on both 7-3 and 3-11 shifts. (Best, if possible, to try and meet the third shift staff, too!)

  • If possible, visit at times when your loved one may need more support–meals, bedtime, sundown.

  • Connect with your loved one in whatever way works for them: music (don’t be shy about singing or dancing!), touch (gentle massage, hand-holding), sensory experiences (sun and wind, lemonade, gardening) going for walks/drives, have activities in mind, as well as backup plans.

Things to keep an eye on and watch out for

• • Weight-loss/gain

  • Abrupt changes in mood

  • Digestive issues

  • Oral hygiene

  • Condition of feet

  • Hydration

Join a support group like the one offered by the RI LTC Ombudsman Program on Zoom