I often get asked to help the family of a person living with dementia (PLWD) to assist in choosing a location where their loved one can reside. These families want the best and have probably already visited several locations to tour their “Memory Care program”. These families are confused because it seems that every type of long-term care or assisted-living location now says they are experts in memory care and have a wonderful program for PLWD. How can they choose the best location?
If you tour various locations or go on their websites to view their information, certain words or phrases pop out such as:
Care - yes, you would want good care but not at the expense of making the PLWD more dependent than necessary. The concept of caring for someone puts that person into a dependent role. The right environment doesn’t just “take care” of but rather offers support – we want to support the PLWD to use their retained talents and skills to be the most independent and self-sufficient as possible.
Safety - safety is a big factor in how professionals develop programs for PLWD. A priority is “decreasing risk” and keeping everyone safe. We would all want any PLWD to be safe and experience no harm. But unfortunately, if the priority is on risk reduction, concepts such as choice and dignity for the PLWD may not be permitted. Excess focus on risk reduction leads to what could be considered a surplus of safety. The PLWD may be encouraged to sit in the recliner all day because if they were to walk around, they might fall. If a PLWD wants to go outside, they may be labeled as “exit seeking” and prescribed an anti-psychotic medication to sedate them. Developers of programs for PLWD should think of walking, exploring, wanting to have new experiences as normal adult expressions and needs. Safety is important, but not at the sacrifice of dignity and individual choice.
Person-centered - This phrase has become so common, it is difficult to know exactly what it means. Care communities will say they have person-centered care, but if you happen to visit in the early morning, it seems that everyone in their memory care program is eating their breakfast together at 8 a.m. How can this be if it is person-centered? For example, I personally like to wake up early, but I prefer not to eat anything for a couple hours. Please don’t try and get me to the breakfast table at 8 a.m. Rather than person-centered, I look for an individual approach that is relationship-based for every PLWD. A relationship takes time to develop and also depends on stability of staffing. A good question to ask is “What is your staffing turn-over rate?”
Engagements - this word has generally replaced the previous term “activities” but still refers to group-type activities such as listening to musical entertainers and current events, and games such as bingo. Some entertainment is fun but really, do any of us look forward to group bingo or a Dean Martin impersonator? I encourage families and PLWD to search for supportive environments that can offer purposeful experiences that will help maintain and build new abilities. Are there opportunities for the PLWD to try new things, to not be labeled by their diagnosis, but rather have choice and even take some risk? For example, does the local art museum have programs for PLWD to learn about exhibits and try their hand at new art projects? Would the local high school theater club come in and rehearse their latest production for the PLWD? Is the PLWD a cat lover and could they assist in fostering a litter of kittens?
It is difficult to make a good choice just reading information – when choosing a location, I strongly encourage visiting in person, several times if possible and at various times of the day. Look for locations that offer:
And put yourself in the place of the PLWD – is this the place you would want to spend every day?