What to Look for in a Dementia Care Team
By: James Lee, Bella Groves Co-Founder & CEO
If you are in the stage of researching dementia care communities where your loved one can receive full-time care and support, you could probably use a helpful guide on what to look for. It can be difficult to feel like you have an informed way of comparing options when you are new to this process. Here is the list of topics we have shared with our own friends and families as insider tips from people who have spent our careers in the senior living industry.
Please note that we titled this guide “What to Look for in a Dementia Care Team” and not “Community.” Overall, the best way to support someone living with dementia is through knowledge, expertise, and training. You are not evaluating the community – i.e., the building – as much as you are the people who will be caring for your loved one. The best teams can overcome any physical location’s flaws. No amount of amenities can overcome a team’s lack of dementia training and knowledge.
Pay attention to the language used by members of the team. How staff talks about their residents, especially as it relates to care tasks, reveals a lot about the culture of how that team sees people living with dementia. See if you can spot the difference.
- We help with feeding vs. We will assist your mom with her meals
- We’ll make sure to change your mom vs. We’ll help your mom get dressed
- I’ll shower her vs. I’ll help her to shower
The difference may seem small, but it speaks volumes. The first examples put the caregiver in the action role: they feed, change, shower, etc.
The second examples put your loved one in the active role and the caregiver in the assistant role: assist, help, etc.
Great care teams see their role as assisting someone in their own care. Untrained teams view their role as doing the care for others – or more accurately, to others. Even in later stages where people living with dementia may need full assistance in their care, well-versed dementia teams always see the person before the care task. The easiest way to spot that collective mindset is the language used amongst the team.
Dementia Care Philosophy or Program
Talk to several members of the team, including the Executive Director or manager, the salesperson, the nurse, and a caregiver. The default greeting or response that most people have when they see a “touring family member” is to give what’s called in the industry as a “30-second commercial.” This is a brief statement about who they are and typically why they love working there. Although it can be genuine, it is more a function of sales training rather than care training.
Instead, ask people you meet to describe the dementia program at their community and what they like about it. This accomplishes a few things.
- Do they know their dementia program enough that they can describe it? Surprisingly, you’ll find that many communities don’t train their dementia program well enough that their staff can speak to it, let alone embody its philosophies.
- You can gauge whether it is a sales pitch (i.e., people know the name of the program) or if it’s a collective mission on the team (i.e., people have shared, meaningful experiences in helping their residents through the program’s teachings).
Observe an Activity
Dementia care communities should have activities and programs that are age-appropriate. If the activity calendar could double as one you would see at a childcare facility, that’s a bad sign. Balloon toss, coloring, snack time, and mystery drive are all actual activities you’re likely to see on some calendars.
By observing an activity in progress, you’ll see whether the team member is doing a custodial activity (giving residents something to do or pass the time) or if it is an enrichment activity. It is common for communities to have programs varied in “dimensions of wellness” and have categories like physical, social, intellectual, emotional, etc.
What makes a program special isn’t the categories – it is the intention behind the program.
In the state of Texas, assisted living surveys are conducted by the Texas Health and Human Services Commission. You can search for long-term care facilities here.
You can find each community you visit on the HHSC website. You can view general information like the number of beds and facility name, but more importantly, you can find out the legal name of its ownership group. Knowing this, you can search for online reviews and information about the parent company, not just the single location.
More likely, you’ll find the inspections and enforcement actions more helpful. The HHSC will report any findings on their most recent inspection – also known more commonly as a “survey.” The site will list specific findings, the code, and the specific violation that was cited. It will also report the dates that the violation was cited and when it was corrected by the business.
Ideally, you want to see “no violations of state standards were cited.” However, if the community you tour tells you that they have a “deficiency-free survey,” you can double-check by checking the HHSC website.
Ask for a Meal (To Go)
Taste the food. If you tour a community around mealtime, they should have some extra food available that you can sample. By tasting the food the residents eat, you will tell a lot about how the team brings joy to residents through food (or not).
If you are touring a community where there are multiple levels of care: independent living, assisted living, and memory care, be sure to ask for the meal while you’re physically standing in the memory care area of the community.
- How long did it take for the meal to get to you?
- Are the items appropriate temperature (warm, cool, hot)?
- Is the meal attractive and garnished?
- Are the portions appropriate or too small/big?
- Does the food TASTE good?
Explain the Dementia
Ask a team member (probably a manager) to explain your loved one’s specific form of dementia to you.
If you don’t know your loved one’s specific dementia diagnosis, simply ask the team member to describe different dementias so that you can better understand what may be going on.
For example, ask, “I’m told my mom has vascular dementia. How is this different from other dementias, and how does your community help people who have this form?”
Someone on the team should be able to give you a lay version of what’s going on. Can people on their team give easy-to-understand explanations of Alzheimer’s versus vascular dementia?
Some dementia care communities call themselves “memory care” but are simply assisted living communities where people with dementia happen to live. Specialized dementia care communities take their dementia knowledge seriously. Minimally, the executive director or the nurse should be able to explain your loved one’s dementia back to you with some reasonable degree of comfort.
The best dementia care teams will have glowing reviews from family members. But, unfortunately, it can be tough to find a lot of truth in online reviews. Businesses either don’t have enough reliable ones or only unhappy customers go online and leave a review.
Although online reviews can give you a starting point, the best testimonials are the ones you can get live from a family member whose loved one lives at the community now. Ask to get a reference from a family member of a resident who has been living there for at least six months.
This time factor is important so that the family member has enough reference of what a typical day/week looks like and has likely experienced both positive and negative situations. How a team responds to negative situations is more important than NOT having them. With dementia care, it is impossible not to have difficult situations arise.
Family members who offer to give a testimonial of the community will likely give you a fair, balanced review of their experiences compared to online reviews.
Putting It All Together
This is not an exhaustive list of things you should consider, but it is a practical one that we would offer to our own friends and family. When in doubt, trust your senses.
- Hear – What is the language used around dementia care?
- See – Are decorations and signs age-appropriate?
- Smell – Does the community smell clean or artificially clean (sprays)?
- Taste – Is the food something you’d like to eat?
Create your own scoring guide of the most important factors to you and your family when it comes to choosing the right care team. It may look something like this:
Give each category a score between 1 and 10. Your top priorities, whichever ones they are, should be weighed more heavily, so multiply each of those scores by two. Add up all the points, and you’ll have at least a numerical representation of your gut feeling.
The first step, however, is to build your own scoring guide and criteria of what is important to you; the most important thing is that you score each community in the same categories.
- State Survey
- Family Reference
- Ask for a Meal
- Language Used
- Dementia Program
- Explain the Dementia
- Observe an Activity
In the end, trust your gut.
If you have a good gut feeling from meeting with members of the team and you have some preparation on how to evaluate them to other teams, you are in a better position than most to make a good decision. Whatever decision you make and whichever team you ultimately choose, stay informed and involved with your loved one’s care and daily life. After all, it’s one thing to meet your criteria at the start. It’s an entirely different and special thing to maintain the standard on an ongoing basis.