Finding an assisted living community for a loved one with dementia can be a daunting process. I have been on both sides of the fence. First as a daughter, looking for a place for my mother after it became clear that she could no longer remain safe in her own home. I did my share of Google searches, asking friends and getting educated. It was hard to know where to start, who to trust, and also what to look for. I knew I had to be especially vigilant, given that my mom was far advanced in her dementia, and that she could no longer be an advocate for herself. Later, as someone in the "industry," I have had the privilege of seeing firsthand what happens behind-the-scenes at assisted living communities and board and care homes, and I have learned much.
Let's say you have done your homework, and maybe enlisted the help of a care manager or a referral agency. You have made a list of what is important to you and your relative. And you have narrowed your search to a few communities. You are ready to tour. Here are the three main questions you need to ask:
1. Most important first: How good is the quality of care?
The attitudes and skills of the staff are the two most important predictors of quality. Also critical is the number of staff.
- Do you see any managers on the floor? Do you see many caregivers? Housekeepers? How engaged is the staff with the residents? Are they just standing on the perimeter "keeping watch"? Are individual caregivers engaged with some residents on the sidelines? Or are residents left on their own just sitting in common areas or in hallways or in their rooms?
- How does the staff relate to the residents? What happens when a resident is upset or needs more care? What are caregivers' attitudes towards residents with advanced dementia? Do they treat them as whole persons, or do they use infantilizing language, or even worse, talk about them as if they were not there? Do they use malignant terms such as "combative," "difficult," "demented," etc? Do they laugh at the person? Are residents encouraged to participate in the functioning of the community?
- How long has the current staff been there? Director? Managers? Caregivers? High turnover at any level in the community does not bode well for the general atmosphere and quality of care.
- How are the meals handled? How is the dining room set up? Are residents talking or just sitting there? It should be pleasant, not too crowded, and some people should be talking, even if it's with a caregiver. People that need assistance with eating should be in a separate area. Does the staff sit down and take the time to assist residents? Or do they stand over the person and hurriedly stuff food in their mouth? Do they talk to the person?
- Do the caregivers appear tired and stressed? Do they rush around?
- How much do caregivers know about each resident? How extensive is the intake process? How much flexibility is there in providing personal care and serving meals? Is everyone on a "schedule"? Can your mom's preferences be accommodated?
- What is the attitude of the person giving you the tour? How does she relate to the residents? How does she handle difficult situations during the tour? Do you get to see all the floors? Or are some parts of the community brushed aside?
- Note the appearance and grooming of the residents. Clothes should be clean and not have food stains on them. If you walk by someone and smell a bad odor, try and go back in 15 to 20 minutes and see if it has been corrected.
- Ask about staff training. What portion of the training is memory care specific? Who does the training? How often? Do employees just watch videos? Ongoing, quality training is essential, and yet often lacking in many communities.
- What is the ratio of care staff to residents? Based on the experiences I've had during my career as a caregiver, I would estimate the average ratio to be roughly one to seven during the day, less at night. What do night and weekend coverage look like? What is the proximity of caregivers to residents? Are they close enough to assist quickly in case of a fall or other incident?
- Be concerned if management asks for additional medications before the person moves in.
- How frequent are family meetings? How responsive is the staff to family requests? Can you come visit any time? If possible, talk to current or past clients.
- What are you paying for? what services are included and which are not? For how long? What happens if your mom needs a higher level of care? Under what conditions would your loved one be asked to leave and find another community?
2. How rich and individualized is the activity program?
A sense of engagement and purpose is important for anyone, including for persons with dementia. You need to investigate the number of scheduled activities, the variety of the programs offered, as well as the meaningfulness of the activities offered.
- Look at the calendar of activities. It should have a variety of options to meet the physical, social, emotional and spiritual needs of residents. Music, art and exercise should be offered at least once daily.
- Activities should address the needs of each resident. Do residents get ushered to group activities with little attention to their personal preferences? If everyone is kept together all day, regardless of level of memory loss, this suggests that the activity program may be weak.
- Do resident contribute to the day-to-day life of the community? Can their special skills and talents still be put to use? We all need to feel useful, regardless of the state of our memory.
- Who leads the activities? Professional activity coordinators, or caregivers with little or no training?
- How involved are the residents in the activities? Are they merely passive recipients of instructions? Or do they participate, socialize, talk, respond?
- Residents are usually highest functioning in the morning, and most should be involved in some kind of activity during that time. After lunch is the quietest time, with many residents sleeping in bed or dozing in chairs.
- Is the TV on 24/7, and are residents "parked" in front of the TV watching random programs? Take that as a red flag.
- Do you see many residents in their rooms lying in bed with no one attending to them? Are there many closed doors?
- For bedridden residents, whether because of advanced dementia or end-of-life condition, are there regular visits from sitting companions?
3. How well-designed and maintained is the place?
The physical design of a community can greatly influence the quality of life for both care staff and residents. How it is kept up says a lot about the management.
- What does the physical layout of the place look like? Is it built like a fancy hotel, a prison, a hospital, a college dorm or a large home? You want a place that feels like home. It should be free of excessive clutter, but not too neat that it does not feel lived in.
- Are there environmental cues to help orient the residents to various parts of the community? Long corridors make it hard for residents to find their way back to their room? Are there personal markers by each room, e.g. pictures, memory boxes, etc.
- How are the rooms/apartments? Are they shared? Are they too small, with little opportunity for privacy? Are they personalized to reflect the person's unique tastes, personality and life history? Can residents bring personal items and furniture? Can residents listen to music and watch TV in their room? What is the bathroom situation? Having one's own bathroom contributes to one's sense of dignity, particularly early on in the dementia. During the later stages, private bathrooms can increase fall risks.
- Do the residents use the common areas or do they look staged?
- Pay attention to environmental factors. What is the noise level? Can residents choose between quiet and social spaces? How is the lighting? The place should be light and airy.
- Is the building one level, or multistoried? Some persons with physical ailments or dementia do not do well with elevators, stairs or complicated exit doors.
- It is also important for the persons to have ready access to ample and pleasant outdoor space. Can they safely venture out on their own, or do they have to wait for someone to take them on a walk?
- Look at the building maintenance. Wheelchairs frequently hit the door jams and chip paint. Some wear is normal, but it shouldn't look neglected. Furniture should be clean and easy for residents to use. Floors should be clean. Carpet should not be stained. Bathroom and dining areas should be clean and free of odor.
Last, make unannounced visits, at different times of the day, different days of the week, including weekends. It is not unusual for communities to "ready" the house before tours, and you really want to see the place as it really is.
I wish you well in your search!
Special thanks to elder care professionals Paula Hertel, Sandra Wallace, and Kaye Sharbrough for their contributions to this article.