Coping With the Pandemic: How to Advocate for Your Loved One With Dementia


Michael Gill

We are nearly five months into the pandemic-induced Senior Living lockdown, where no one is allowed inside the building to see their loved one. While this impacts the whole spectrum of senior living alternatives, it is particularly cruel for those with dementia, where people can’t understand or remember the pandemic. I know of one Memory Care resident who asked a caregiver: “my children don’t visit anymore; have I done something wrong?” Tragic anecdotes abound. In one case an Assisted Living resist developed pressure sores from inactivity, since the community requested residents to isolate in their rooms and family couldn’t visit and monitor her health. In another case a non-verbal Memory Care resident lost 20 pounds because his wife couldn’t visit and feed him, as was her daily routine. Rather than malign neglect, these stories illustrate more the difficulties communities have adapting to residents’ needs in the changing circumstances of the pandemic.

So how do families adapt to the changing requirements of being an advocate for their loved one during this ever-lengthening pandemic? What efforts can you make to ensure your loved one is consistently clean, well fed, properly medicated, intellectually stimulated, and appropriately cared for? Here is a list of strategies.

Official Channels First

Figuring out which member of the leadership staff is the most helpful is the first thing to do. There may be what we could term an “official family liasion,” usually the nurse but sometimes a social worker or Memory Care Director, depending on the type of facility. But sometimes it is easier to get news and action from a different member of the leadership team, such as the admissions director or executive director. Explore these opportunities. Don’t forget the dining services director and head of the therapy department. Often these staff members participate in morning “stand-up” meetings and get information as well. The leadership team can implement things on a higher level than anyone else in the building, and have the most information, so this is the first place to begin.

If you can’t get information from one source, don’t hesitate to ask some one else. Always give management the first chance to give you the information you need and deserve. After all you will need their support going forward, and there is no point in burning bridges.

Care Plan Meetings

Some communities have policies and procedures requiring care plan meetings regularly, say on a semiannual basis. Usually a resident’s family can request one. These are meetings where departments heads contribute information they see from their perspective, and care plan meetings usually include reports from healthcare, caregivers, dining services, activities, and physical therapy departments. This is a good venue to review doctors’ notes, medical changes, eating habits, weight change, changes in routines and behaviors, and medications.

And you don’t have to wait for a formal care plan meeting. If you are getting inconsistent or suspect information from different sources, simply request a conference call with multiple staff members on the call to get things sorted out, and accountability for action items established.

Medication History List

Getting a download from the digitized medication management system is always a good idea, so that you can compare what has been administered against what is officially prescribed, and what you think is appropriate. Oftentimes there are drugs that you know to be no longer necessary, or dosages being incorrectly administered that you can spot. Less often but certainly not unheard of are medications that you never consented to, always requiring a doctor’s orders but sometimes “suggested” by the community. Trust but verify!

Window Visits, Video Chat, Phone Calls

For physical proximity, these visits are the best we can do during a pandemic-generated government lockdown. Such visits are inadequate for a comprehensive assessment of a loved one’s physical condition, but they certainly enable at least some insight, especially into their emotional well being. Little things are telling, such as whether their teeth are brushed, how well they are groomed, if they appear to have lost weight, whether their hearing aides are working properly, or how their voice sounds. If you get a funky feeling something is not right, follow your intuition! No one else knows your relative as well as you do.

Beware that window visits can have drawbacks. Residents (or families) can become overly emotional when visits are infrequent. Residents can have unanticipated behaviors, such as demanding to go home or becoming unruly because their emotional balance has been thrown off by the visit. There can be surprises.

Less-Offical Channels of Communication

Make friends with the caregiving staff!! This is not easy to do when you can’t visit the building. So you need to go on a mission to get phone numbers. Sometimes you need to ask whoever answers the phone at the front desk whom you should talk to. Sometimes it is the med-tech’s phone where you can garner connections. Be creative: you want to get to know as many caregivers as you can, because there is always staff turnover. Don’t forget there are usually three shifts, and it is helpful to know someone on each shift. Get their personal cell phone numbers, so you can use text messaging as well (maybe you’ll get more photos that way). In particular find out who bathes your loved one, because checking on skin integrity is important.

Relationships with caregivers can be nurtured. Praise them to management. Send a hand written thank you note. Send cookies or pizza to the whole shift. Even gift and gas cards are appreciated, though it is probably wise to ask they not spread news of your gift around.


Granny cams give someone a good idea what is going on, in any number of ways. Current models have sound as well as video. I’ve known families who have been able to diagnose infections just from seeing a relative’s behaviors. In isolated and unfortunate incidents outright abuse has been caught.

Smart speakers such as Alexa can be useful for some residents, though most elders with memory problems can’t make good use of them. Electronic frames entertain some residents, though others ignore them or find the technology annoying. These technologies require experimenting and flexibility on the family’s part.

Solicit other Professional Service Providers for Information

Be attentive to when service professionals are in the building. Given the lockdown it’s often confusing as to who is and isn’t allowed to visit, because different communities have different policies for different professionals. Find out who is physically visiting the building. I’m referring to doctors, nurse practitioners, hospice nurses, hospice bathers, podiatrists, Home Health professionals (PT, OT, nurses), geriatric psychiatric services, and even hair dressers. Many of these are doing telemedicine only because they have clients in multiple communities and don’t want to risk cross-infecting different buildings. Other professionals are simply prohibited as non-essential. But some communities are allowing in professionals who only visit their building, such as physical therapists. If you can find those professionals who are doing physical visits, solicit their opinion of your loved one’s status, both within their area of expertise as well as their personal opinions. You never know what you will learn.

Demand the Community Facilitate Communication

The pandemic has been hard on communities in that it has placed increased work on all their staff. Nevertheless families still need to demand the community provide multiple means of communication with your loved ones. The phone calls and occasional video calls provided at the beginning of the pandemic are no longer sufficient for the increased monitoring necessary for ensuring a relative’s well-being. There needs to be high quality video calling stations within the community where residents can privately speak with their loved ones.

Window visit stations need to be creatively arranged. Often this is a window near the front door, or in the dining room, or a windowed door at the end of a hallway. But I’ve seen window-visit stations in the rehab/workout room, movie theater or even empty apartments. Really, anyplace with a window facing the outside, and preferably without bushes. Shade needs to be provided by the community for families outside, so a portable canopy needs to be set up. Baby monitors are a good device for hearing, as telephones have a split second delay and can be difficult.

Outdoor visitation stations also should be built, an expense necessary since this pandemic-lockdown probably won’t end until spring 2021. Some communities have convenient fences where visitation stations can easily be set up. Screen porches, gazebos or other temporary structures which ensure six feet of separation can be set up. Again, portable canopies are important for shade.

The community needs to have a designated staff member to schedule these visits, and ensure the visitation stations are private, functional, clean, and accessible to all residents. The same or another staff member needs to be available to help with the video technology as well.

Squeaky Wheel Gets The Grease

To advocate for your loved one, there are times when you need to be aggressively assertive. But this is a last resort, and know where to draw the line between between appropriate and inappropriate. Caring for your loved one is a partnership between you and the community. While you have the authority, they shoulder the caregiving burden. Be respectful and cognizant of their stress as well. Practice polite persistence over bullheaded insistence. Calm and rational conversations will get you further than confrontational encounters. Remember that you have to play the long game, and in order to advocate effectively for your relative, you need an ongoing working relationship with the community’s staff. Show appreciation for their efforts whenever possible.

Old School ideas

Finally, the family can help staff provide memories with residents. Poster boards showing a family tree along with photos can help staff start conversations and reminiscences. Photo montages can help too, but sometimes it is best to have the photos be from 40 years ago, because sometimes your loved one will remember that time better. And cards with photos enclosed are useful because staff can re-use them, since the resident often don’t remember they’ve seen those cards before.

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